This is just a quick note to let you all know Michelle had to skip yesterday's scheduled Chemo treatment because her blood counts were too low. We're going to give her body a week to recover and check her counts again next Monday in advance of the scheduled Tuesday treatment. We are experiencing an odd mixture of disappointment and relief over this news. Disappointment because we want to keep the treatment moving, but relief because she doesn't have to endure the aftermath. In the end, though, it's all in God's hands, so we do our best to take it in stride.
Michelle has been feeling remarkably well the last several days: more energy, less pain, less nausea. She still gets fatigued easily, but her current state is a big improvement over how she felt before the first chemo treatment.
The cancer center decided it's time to give Michelle a port, a surgically implanted device that will reside just below the skin of her chest and provide easy, reliable access for IV medications and blood draws. (No more pokes!) The implantation is performed by a surgeon under general anesthesia. We have a consultation appointment scheduled for Friday, February 6.
The prayer meeting on Monday was full of praise songs, uplifting scripture readings, and positive energy. This week we placed Michelle on a portable massage table in the center of the room, laid on hands and prayed over her. We really appreciate everyone who was able to be present and all of you who prayed with us from afar. We've been hearing from more and more people who confirm that they have been praying with us every Monday evening 7:00 PM mountain time, and we dearly appreciate it. The healing wall of hope continues to grow.
Wednesday, January 28, 2009
Saturday, January 24, 2009
"Wocka Wocka Wocka Wocka"
Visualize an army of Pacman, Ms. Pacman, and all their tiny little Pacfriends gobbling up the cancer. That's Michelle's vision of how chemo works. (The sound effects in the blog title are mine.)Michelle came through her first round of chemotherapy with flying colors, although it was quite a ride. After an uplifting prayer meeting on Monday night, we arrived at the treatment center at 2:15 Tuesday afternoon. The treatment itself went well, with no complications, and we left about 3 hours later. Michelle said she felt bloated and "weird".
They prescribed Compazine and Ativan for nausea, on top of the Zofran we have already been using, and advised Michelle to take both when she got home. Although she experienced little or no nausea, the Ativan apparently caused muscle spasms that lasted all night long and kept her from sleeping. She was finally able to fall asleep around 6:00 AM, just as I was leaving for work. She slept pretty well until around 2:00 PM and then came downstairs to make a fruit smoothy.
When she went back upstairs to our bedroom, she felt completely wiped out and was breathing heavily. I had come home from work early because both kids had to work in the afternoon, and I grew concerned about her breathing. We checked her oxygen saturaion with a fingertip pulse oximeter I bought over the internet. The reading was 74%, and it dropped to 64% as I watched. (For perspective, they sent Michelle home from the hospital in December with oxygen because her reading kept falling to the low 80's - normal readings fluxuation between about 91 and 99.) We immediately put her on oxygen and her levels quickly returned to normal. What a scare!
The rest of Wednesday was pretty uneventful. Michelle was very, very tired but so far not really nauseous and her pain was under control. She slept well Wednesday night.
Thursday was a different story. While she did sleep OK, she was still quite fatigued. In the mid-morning she felt well enough to take a shower, but her O2 saturation fell to 80 and we put her back on oxygen for a while. The nausea struck with a vengeance in the early afternoon. I guess you could say that the medications did their job because she never actually vomited, but her misery was palpable. I took the day off work as planned and did all I could to comfort her, but in the end there was precious little I could do.
Fortunately, at around 5:30 PM the nausea passed and she suddenly felt better. It was like a veil of fog suddenly lifting, very much like the way a fever will suddenly lift. Michelle was able to eat some dinner and just lay back and relax. We spent the evening watching some TV and she slept like a baby all night.
Friday (yesterday) we met Dr. Gwen H. Lisella, MD. She is a radiation oncologist and will be performing palliative radiation treatments to address the cancer that has apparently spread into the bone of Michelle's T11 vertebra. We saw the image from last week's MRI. The good news is that the cancer is well away from the spinal cord. There is a black area on roughly half of the front side of the bone that the radiologists identified as cancer. Dr. Lisella said this area is fairly east to treat without huge impacts on the abdominal organs, but there will still be some nausea and increased gastric reflux as a result of the treatment. She is going to consult with both Dr. Marschke to coordinate radiation therapy with chemotherapy and with Dr. James Derrisaw, the pain management specialist who administered the celiac nerve bundle block back in December*. We should hear back from her by next week Thursday to set a treatment schedule.
The radiation treatments will take place over a 2 week period, Monday through Friday. We may want to try to schedule them to take place during the 2 week chemo hiatus in early March. Dr. Lisella said that such a delay should not make much difference in the outcome of the treatment. Given this week's experience with chemo, I support the idea of not adding daily radiation to the mix at this time.
* - The celiac bundle block was a treatment to provide longer-term pain management for Michelle's intense abdominal pain. The treatment was administered during her hospital stay the week of December 15 and consisted of a 4-point injection of a powerful alcohol solution which dissolved the nerve sheaths, effectiving deadening the pain transmission of the major abdominal nerves. The injection sites were near the T10 and T11 vertebra (in the middle of the back near the bottom of the rib cage and the top of the stomach). There is no indication or expectation that this injection had anything to do with the dark spot on the MRI. Dr. Lisella want to consult with Dr. Derrisaw to make sure all bases are covered, and to further rule out any relationship with his treatment and what we now see with T11.
We continued to add to the healing wall this week. We added pictures of everyone who attended this week's prayer meeting, plus hand written signs "God has a Plan for Me" and "One Day at a Time". These additions, plus a prayer from our dear friend Brenda and pictures friends and family members who have fought bravely and unselfishly cared for others, were a great source of strength and inspiration for Michelle during her lowest moments this week. She feels overwhelmed by all the love and support she is receiveing and tears up when she speaks with amazement at all the people who love and care for her. God bless you all, and please keep up your prayers.
Saturday, January 17, 2009
Next Prayer Meeting Monday Jan 19, 6:30 PM MST
Since Michelle will commence her chemotherapy treatments next Tuesday afternoon, we wanted to hold our next prayer meeting on Monday evening. We will gather in our home at 6:30 PM: if you would like to synchronize your prayers with us from a distant location, 6:45 or 7:00 would be a good time to start.
As I noted in my last posting, Michelle has been experiencing pain related to an apparent tumor in her T11 vertebra. In the last few days this pain has increased, so an MRI scan was performed yesterday (Friday Jan 16). The scan revealed cancer both in the bone and in the marrow, but there was no nerve impingement present. In order to reduce related pain by reducing the size of these tumors, Michelle is scheduled for targeted radiation on Friday, January 23. If an earlier appointment opens up, we intend to move up her appointment.
In the mean time, Dr. Marschke told us to double Michelle's pain medication. So far the new level seems to be helping, but it is definitely affecting Michelle's alertness.
As I noted in my last posting, Michelle has been experiencing pain related to an apparent tumor in her T11 vertebra. In the last few days this pain has increased, so an MRI scan was performed yesterday (Friday Jan 16). The scan revealed cancer both in the bone and in the marrow, but there was no nerve impingement present. In order to reduce related pain by reducing the size of these tumors, Michelle is scheduled for targeted radiation on Friday, January 23. If an earlier appointment opens up, we intend to move up her appointment.
In the mean time, Dr. Marschke told us to double Michelle's pain medication. So far the new level seems to be helping, but it is definitely affecting Michelle's alertness.
Thursday, January 15, 2009
Houston, we have a plan! (and a schedule)
Greetings all!
The prayer service at our house Monday night was (to use a much-overemployed-but-very-apt superlative) AWESOME! Fifteen members of Michelle's prayer circle (if you pray for Michelle, you're in the circle - even if you just send positive thoughts her way, you're in the circle too) met in our home Monday night for spiritual readings, community prayer, laying on hands, and above all: Healing! It was a tremendously supporting, energizing, uplifting, inspiring event and we can't thank all of you enough - those present in person and those praying with us from distant locales. We are going to try to hold these prayer meetings every week, depending on Michelle's status. Watch the blog for announcements.
On Tuesday morning, Michelle and Bill went down to Denver for an appointment with Dr. Weekes. The blood tests showed that her bilirubin level, while much lower, is not low enough for the parameters of the clinical trial. Even if her levels were to get down that low, it is very unlikely they would stay there for long. The clinical trial is therefore off the table, and it's time to move forward with the FDA-approved "standard of care" chemotherapy for this particular cancer.
At the risk of getting too technical, here are a few words about bilirubin. One of the important jobs of the liver is to destroy red blood cells. The waste products from the destroyed cells are excreted in the form of bile, which enters the small intestine through the common bile duct. Cholangiocarcinoma, bile duct cancer, forms tumors in the bile duct itself which tends to create blockages, impeding or halting the flow of bile. The bile backs up into the liver and eventually enters the bloodstream, where it is called "bilirubin". All of us have some levels of bilirubin in our blood; the normal level is 1.2 (not sure of the units, but probably something like parts per million.) In Michelle's case, her bilirubin peaked around 7.5 immediately following the last ERCP (Jan 5) and was down to 2.8 on Tuesday. The study parameters require levels of 2.0 or below. Michelle's gastroenterologist said that level is probably unrealistic in her case.
Now for the plan.
On Wednesday we met with Dr. Robert F. Marschke from Front Ranger Cancer Specialists here in Fort Collins. We have been meeting with Dr. Marschke since December, using him as a sounding board and second opinion to balance the information we have been getting from the specialists at UCH. After reviewing our options with him, we decided to shift gears and asked Dr. Marschke to take the lead as Michelle's primary oncologist. There are several advantages to this.
First, we won't have to drive back and forth to Denver for treatments: FRCS is just 5 minutes from our house. this is a big deal since the primary side effect from chemo will be fatigue.
Anything we can do to minimize fatigue would be good.
Second, coordinating treatment between Denver and Fort Collins has been challenging, and the challenges would only get worse. Of course we would be more than happy to do whatever it takes to get Michelle the best treatment possible, but it looks like we can accomplish that right here in our home town.
Third, we really like Dr. Marschke. He is very caring and compassionate, and willing to listen to us and answer all our questions. When we pointed out a discrepancy between what we heard in Denver and what he told us, he immediately went to his computer, researched the question to make sure he had the absolutely latest information, and discussed the findings (which validated his position.)
The plan is to start chemotherapy with a drug called gemcitabine (aka Gemzar) next week. Treatments are scheduled every Tuesday afternoon (time varies) for the next 6 weeks. The next 2 weeks would be spent getting a PET scan, resting, and reviewing and updating the treatment plan. Assuming the therapy is working and Michelle is tolerating it well, we would start a new cycle of 3 weeks of treatment followed by one week of rest.
There is one other piece of news that we hadn't planned to share, but it may be more important than we thought. Late last week Dr. Marschke ordered a CT scan of Michelle's lungs to check for pulmonary embolisms (blood clots in the lungs) based on a new pain in her side. While no clots were found, and in fact a small clot noticed back in December had vanished, they did spot a probable new tumor on her T11 vertebra. We took this as simply more evidence of metastasis (spread of the cancer) which isn't news and doesn't change the treatment options. As it happens, this tumor bears watching because as it grows it can cause nerve problems with varied and unpredictable symptoms. If this tumor becomes a problem, the treatment will be palliative radiation to shrink it and alleviate symptoms. We'll keep you posted.
Thank you again for reading this blog and keeping us in your thoughts and prayers. They really do make a difference.
The prayer service at our house Monday night was (to use a much-overemployed-but-very-apt superlative) AWESOME! Fifteen members of Michelle's prayer circle (if you pray for Michelle, you're in the circle - even if you just send positive thoughts her way, you're in the circle too) met in our home Monday night for spiritual readings, community prayer, laying on hands, and above all: Healing! It was a tremendously supporting, energizing, uplifting, inspiring event and we can't thank all of you enough - those present in person and those praying with us from distant locales. We are going to try to hold these prayer meetings every week, depending on Michelle's status. Watch the blog for announcements.
On Tuesday morning, Michelle and Bill went down to Denver for an appointment with Dr. Weekes. The blood tests showed that her bilirubin level, while much lower, is not low enough for the parameters of the clinical trial. Even if her levels were to get down that low, it is very unlikely they would stay there for long. The clinical trial is therefore off the table, and it's time to move forward with the FDA-approved "standard of care" chemotherapy for this particular cancer.
At the risk of getting too technical, here are a few words about bilirubin. One of the important jobs of the liver is to destroy red blood cells. The waste products from the destroyed cells are excreted in the form of bile, which enters the small intestine through the common bile duct. Cholangiocarcinoma, bile duct cancer, forms tumors in the bile duct itself which tends to create blockages, impeding or halting the flow of bile. The bile backs up into the liver and eventually enters the bloodstream, where it is called "bilirubin". All of us have some levels of bilirubin in our blood; the normal level is 1.2 (not sure of the units, but probably something like parts per million.) In Michelle's case, her bilirubin peaked around 7.5 immediately following the last ERCP (Jan 5) and was down to 2.8 on Tuesday. The study parameters require levels of 2.0 or below. Michelle's gastroenterologist said that level is probably unrealistic in her case.
Now for the plan.
On Wednesday we met with Dr. Robert F. Marschke from Front Ranger Cancer Specialists here in Fort Collins. We have been meeting with Dr. Marschke since December, using him as a sounding board and second opinion to balance the information we have been getting from the specialists at UCH. After reviewing our options with him, we decided to shift gears and asked Dr. Marschke to take the lead as Michelle's primary oncologist. There are several advantages to this.
First, we won't have to drive back and forth to Denver for treatments: FRCS is just 5 minutes from our house. this is a big deal since the primary side effect from chemo will be fatigue.
Anything we can do to minimize fatigue would be good.
Second, coordinating treatment between Denver and Fort Collins has been challenging, and the challenges would only get worse. Of course we would be more than happy to do whatever it takes to get Michelle the best treatment possible, but it looks like we can accomplish that right here in our home town.
Third, we really like Dr. Marschke. He is very caring and compassionate, and willing to listen to us and answer all our questions. When we pointed out a discrepancy between what we heard in Denver and what he told us, he immediately went to his computer, researched the question to make sure he had the absolutely latest information, and discussed the findings (which validated his position.)
The plan is to start chemotherapy with a drug called gemcitabine (aka Gemzar) next week. Treatments are scheduled every Tuesday afternoon (time varies) for the next 6 weeks. The next 2 weeks would be spent getting a PET scan, resting, and reviewing and updating the treatment plan. Assuming the therapy is working and Michelle is tolerating it well, we would start a new cycle of 3 weeks of treatment followed by one week of rest.
There is one other piece of news that we hadn't planned to share, but it may be more important than we thought. Late last week Dr. Marschke ordered a CT scan of Michelle's lungs to check for pulmonary embolisms (blood clots in the lungs) based on a new pain in her side. While no clots were found, and in fact a small clot noticed back in December had vanished, they did spot a probable new tumor on her T11 vertebra. We took this as simply more evidence of metastasis (spread of the cancer) which isn't news and doesn't change the treatment options. As it happens, this tumor bears watching because as it grows it can cause nerve problems with varied and unpredictable symptoms. If this tumor becomes a problem, the treatment will be palliative radiation to shrink it and alleviate symptoms. We'll keep you posted.
Thank you again for reading this blog and keeping us in your thoughts and prayers. They really do make a difference.
Sunday, January 11, 2009
Please join us in Prayer Monday Evening, 1/12
It's been almost a week since the procedure to refresh Michelle's bile duct stents, and all indications are the procedure was successful. Her color is better, and she seems to be much more comfortable. The pain and nausea have let up a bit, and we've been able to cut her breakthrough pain medication in half. Her color is improving (much less yellow today) and the itchiness is reduced, so hopefully we'll get the green light to start chemo treatments when we meet with oncologist Dr. Weekes in Denver on Tuesday morning.
I know this is late notice, but we have organized a healing prayer meeting in our home tomorrow evening, Monday January 12. Karen Lowe, our close friend and former pastor of Christ United Methodist Church will be leading the meeting, with the help of Bob Simpson, another close friend who was also a pastor at CUMC. We will be praying over Michelle and participating in several healing rituals. Our focus will be on asking God for miraculous healing.
For those of you who wish to be prayer warriors for Michelle but are unable to attend on Monday, please join us in prayer from wherever you happen to be at 7:00 PM Mountain Time on Monday. If you are in the area and would like to participate in person, please call for specifics. We made several direct invitations, but welcome anyone who would like to pray with us.
I know this is late notice, but we have organized a healing prayer meeting in our home tomorrow evening, Monday January 12. Karen Lowe, our close friend and former pastor of Christ United Methodist Church will be leading the meeting, with the help of Bob Simpson, another close friend who was also a pastor at CUMC. We will be praying over Michelle and participating in several healing rituals. Our focus will be on asking God for miraculous healing.
For those of you who wish to be prayer warriors for Michelle but are unable to attend on Monday, please join us in prayer from wherever you happen to be at 7:00 PM Mountain Time on Monday. If you are in the area and would like to participate in person, please call for specifics. We made several direct invitations, but welcome anyone who would like to pray with us.
Tuesday, January 6, 2009
All's Well, Time to Wait (again)
Michelle's procedure yesterday went better than expected. Unlike the ERCP on the day after Christmas, the new stent slid right into place in her left hepatic duct. The doctors also placed a stent into the right hepatic duct. The two stents run next to each other through her common bile duct and both terminate at the opening into her small intestine (imagine a large Y made of 2 equal length tubes). Hopefully these two stents will provide adequate drainage so her bilirubin levels come down, allowing the chemo treatments to start. We'll know the outcome in about a week, as it will take that long for the excess bile to drain.
Our next appointment is Tuesday 1/13 with Dr. Weekes at the UCH Cancer Center in Denver.
We discussed additional therapies with the Gastroenterology team (Drs. Shah and Yen this time) and they have several more tricks up their sleeve in the event additional drainage is necessary.
Assuming yesterday's procedure is successful, and assuming the oncology team agrees, they will replace the temporary plastic stents with "permanent" metal stents in about 6 weeks. They used the plastic stents again because it is more difficult to work around metal stents if additional procedures to add drainage are required.
Dr. Shah also told us that there is a gastroenterology conference scheduled for mid-February, with specialists from across the country to hear him and Dr. Chen speak. The timing may work out such that Michelle could be the subject of a demonstration for placing metal stents (Shah and Chen would perform the procedure). Her face and identity would be obscured, but her innards could be famous! Michelle likes the idea of being able to contribute to the body of knowledge surrounding her condition and enthusiastically agreed to participate. Of course, Michelle's needs come first, and they will not attempt to delay necessary treatment for the sake of this demonstration.
Our next appointment is Tuesday 1/13 with Dr. Weekes at the UCH Cancer Center in Denver.
We discussed additional therapies with the Gastroenterology team (Drs. Shah and Yen this time) and they have several more tricks up their sleeve in the event additional drainage is necessary.
Assuming yesterday's procedure is successful, and assuming the oncology team agrees, they will replace the temporary plastic stents with "permanent" metal stents in about 6 weeks. They used the plastic stents again because it is more difficult to work around metal stents if additional procedures to add drainage are required.
Dr. Shah also told us that there is a gastroenterology conference scheduled for mid-February, with specialists from across the country to hear him and Dr. Chen speak. The timing may work out such that Michelle could be the subject of a demonstration for placing metal stents (Shah and Chen would perform the procedure). Her face and identity would be obscured, but her innards could be famous! Michelle likes the idea of being able to contribute to the body of knowledge surrounding her condition and enthusiastically agreed to participate. Of course, Michelle's needs come first, and they will not attempt to delay necessary treatment for the sake of this demonstration.
Saturday, January 3, 2009
Here we go again - ERCP on Monday
Friday's blood tests showed Michelle's bilirubin remains high, so another ERCP is scheduled for Monday January 5 at 1:30 PM. They'll check out the current stent and probably replace it with a new one.
In the December 26 procecure, the replacement stent was only placed across the blockage in the main bile duct, where the cancer was found. Upon further examination, the doctor concluded the site of the upper blockage (the left hepatic duct) which was stented in early December was probably not cancerous and he believed the blockage was cleared and no longer needed to be stented. Given that Michelle's bilirubin levels have increased beyond where they were on 12/23, it seems likely the left hepatic duct is blocked again.
In any event, Dr. Chen also told us that he wants to place a permanent metal stent instead the temporary plastic stents they have been using, since surgery has been ruled out. He had planned to see Michelle again in mid-February and place the stent then. It seems likely that since he's performing another ERCP now that he'll place the metal stent, but we haven't been told one way or the other. The advantage of the metal stent is that it is somewhat larger and less prone to blockages. Plastic stents can last up to 3 months; metal stents can stay in place for 9-12 months or even longer. We're hoping this will mean fewer ERCP procedures so we can focus on fighting the cancer instead of remediating the symptoms.
Michelle's sister Kim left on Friday to return home to California. We found out before she left that her husband Lindsey has painful shingles! He's in quite a bit of pain, but should make a full recovery. It was great to have Kim with us for a week, she was a big help and enabled Bill to work a full week for the first time since November.
In the December 26 procecure, the replacement stent was only placed across the blockage in the main bile duct, where the cancer was found. Upon further examination, the doctor concluded the site of the upper blockage (the left hepatic duct) which was stented in early December was probably not cancerous and he believed the blockage was cleared and no longer needed to be stented. Given that Michelle's bilirubin levels have increased beyond where they were on 12/23, it seems likely the left hepatic duct is blocked again.
In any event, Dr. Chen also told us that he wants to place a permanent metal stent instead the temporary plastic stents they have been using, since surgery has been ruled out. He had planned to see Michelle again in mid-February and place the stent then. It seems likely that since he's performing another ERCP now that he'll place the metal stent, but we haven't been told one way or the other. The advantage of the metal stent is that it is somewhat larger and less prone to blockages. Plastic stents can last up to 3 months; metal stents can stay in place for 9-12 months or even longer. We're hoping this will mean fewer ERCP procedures so we can focus on fighting the cancer instead of remediating the symptoms.
Michelle's sister Kim left on Friday to return home to California. We found out before she left that her husband Lindsey has painful shingles! He's in quite a bit of pain, but should make a full recovery. It was great to have Kim with us for a week, she was a big help and enabled Bill to work a full week for the first time since November.
Friday, January 2, 2009
Happy 2009!
Happy New Year! 2009 will be a year of hope and healing at the McDonough home.
Time to catch up on what's happened in the last week.
We had a great Christmas with Michelle's parents and Bill's brother Tim visiting. Michelle's folks arrived by car from Arizona the Sunday before Christmas and stayed with us for a week. It was great to have them with us and we really appreciated all their help and support.
Michelle's sister arrived from California Sunday night and has been a big help all week, and even enabled Bill go back to work. She's heading back home tonight (Friday Jan 2).
On the health front, we went down to Denver on Friday, December 26 for an early morning procedure to replace Michelle's bile duct stent, which had become blocked causing her bilirubin levels to rise. It's important to keep those levels down to satisfy the treatment protocol for the chemotherapy drugs.
For the first few days after the procedure, Michelle seemed to get better. We managed to keep her pain under control and she was relatively comfortable through the weekend and Monday. Unfortunately, on Tuesday we noticed she was getting yellow and itchy again, a sign of jaundice and an indicator that the bilirubin was on the rise again. Blood work on Wednesday confirmed levels higher than before the 12/26 procedure. Another blood draw is scheduled for today, and it looks like another procedure may be in the cards early next week.
We'll keep you posted.
Time to catch up on what's happened in the last week.
We had a great Christmas with Michelle's parents and Bill's brother Tim visiting. Michelle's folks arrived by car from Arizona the Sunday before Christmas and stayed with us for a week. It was great to have them with us and we really appreciated all their help and support.
Michelle's sister arrived from California Sunday night and has been a big help all week, and even enabled Bill go back to work. She's heading back home tonight (Friday Jan 2).
On the health front, we went down to Denver on Friday, December 26 for an early morning procedure to replace Michelle's bile duct stent, which had become blocked causing her bilirubin levels to rise. It's important to keep those levels down to satisfy the treatment protocol for the chemotherapy drugs.
For the first few days after the procedure, Michelle seemed to get better. We managed to keep her pain under control and she was relatively comfortable through the weekend and Monday. Unfortunately, on Tuesday we noticed she was getting yellow and itchy again, a sign of jaundice and an indicator that the bilirubin was on the rise again. Blood work on Wednesday confirmed levels higher than before the 12/26 procedure. Another blood draw is scheduled for today, and it looks like another procedure may be in the cards early next week.
We'll keep you posted.
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