Still in the hospital

I'll try to keep this update brief, but a lot has happened since the last post.

The pain pump was installed on Friday morning. The surgery went smoothly and the pump is working. Unfortunately, the process of getting the dosage to the proper level has been a slow and agonizing process. Since every patient is different and since this is a new and relatively rarely used technology, finding the right dose is challenging. The process is to start with a low dosage and gradually increase it, being careful not to go to far too fast, out of concern of triggering side effects such as over sedation or respiratory impairment. This caused Michelle to have much higher pain than we would like Friday night (she didn't sleep a wink) and most of the day Saturday. Fortunately, the pain doctors increased the frequency of the bolus doses the pump was allowed to deliver and also added an order for oral pain medication for breakthrough pain. Last night she was able to sleep much better.

In the last post I didn't say much (if anything) about what has emerged as a key symptom that we are currently working to overcome. For reasons that have not yet become clear, Michelle's abdomen is distended and full of gas. Abdominal x-rays show gas in her colon suggesting reduced motility in her small intestines, even though the constipation remedies have been doing their job. Her belly is large and very firm to the touch, causing her organs to be pushed up tight against her diaphragm and preventing her from taking deep breaths. This in turn is significantly affecting her pulmonary function.

After the surgery on Friday, she needed 10 liters of oxygen just to keep her O2 saturation levels in the nominal range. This required not 1 but 2 oxygen masks, pulling 5L from each. On Saturday we were able to step her down to her current (but still quite high) level of 5L.

She is also retaining quite a bit of fluid, particularly in her legs which are visibly swollen. This makes walking painful and difficult. She's able to get back and forth to the bathroom, but that's about it. We'd like for her to be able to walk more because walking will help with the gastric issues and hopefully reduce the gas in her belly.

The plan for today:

1. Base line pain pump dosage doubled from yesterday, bolus schedule increased to once every 4 hours (up from 1 every 6 yesterday), oral pain meds still available for breakthrough pain.

2. CT scan to get a closer look at her lungs to determine why the pleural effusions
are increasing. We first saw small amounts of fluid in her pleural (lung) cavity but outside of her lungs back in December on the first PET scan. After decreasing for a while, they came back at about he same level, but have increased again just in the last couple of weeks. Dr. Marschke has asked for a pulmonologist to take a look at Michelle to help figure out the breathing issues.

3. An echocardiogram to check on her heart - a chest x-ray reported a mild enlargement which may be due to portions of the view being obscured by low lung volume.

Dr. Marschke doesn't expect Michelle to be ready to go home until at least Tuesday, and maybe a few days after that. There are still quite few issues that must be resolved first, but at least we have a plan and are making progress if only by inches.

One last piece of good news: there is every indication that the cancer treatments that Michelle has been receiving are still working and keeping the cancer at bay. There has been no indication that anything is growing or spreading. We need to keep focused on that fact and celebrate the good things that are happening in the midst of these challenging times.

Thank you all for your prayers.

Bill & Michelle (typed on the WebTV at Michelle's bedside)

Adventures in Pain Management

Michelle was admitted to Poudre Valley Hospital (PVH) on Tuesday for pain management and tests to figure out what's behind the pain. I'll skip the gory details and tell you where we stand as of Thursday morning.

For pain management, the plan is to install an intrathecal pump, aka an epidural pump. This works much like the epidural that they give to delivering mommies to ease their pain, in that a catheter inserted into the intrathecal space in the spinal column delivers pain medicine directly into the spinal fluid and blocks the pain signals from reaching the brain. A hockey-puck sized pump will be installed under the layer of fat in her abdomen to deliver a constant, low-level flow of pain medicine. Michelle will have a remote control to deliver a bolus (larger dose) of medicine if she is having "break through" pain.

The primary advantage of this method is that a tiny fraction of the pain medicine dosage will have the same effect as the oral medication we had been using, resulting in almost negligible side effects like constipation, mental fogginess, and respiratory suppression.

A trial epidural catheter was installed Tuesday evening to experiment with different medications and doses to find the right combination to make Michelle comfortable. She's now on morphine, and it seems to be doing the job. We're also dealing with the consequences of being on pain medication for several days and working to alleviate those symptoms to clear the way for installation of the pump tomorrow.

Michelle will also have an MRI this afternoon to recheck the status of the tumor in her vertebra that was treated with radiation back in February.

Speaking of radiation therapy, it turns out that this whole episode of pain is related to that same treatment. The radiation beam that treated the tumor in her spine had to travel through her liver and her stomach on the way to its target. Normally this is no big deal, but there is always risk of organ damage from the radiation, which we were made well aware of at the time. When no damage showed up by 6 weeks after the end of treatment, we all believed Michelle was in the clear. We were wrong.

It turns out that Gemcitabine (aka Gemzar), the chemo drug that Michelle has been on since January, can act as a radiation sensitizer, even after the fact. Dr. Marschke has used Gemcitabine along with radiation therapy with good results in many other patients, but usually for pancreatic cancer. Since the pancreas is off to the side and well away from the liver, he's never seen an effect like Michelle's. Dr. Simpson the radiologist said he's never experienced a problem, either. Regardless of all that, it is fairly clear from the evidence we have that a portion of Michelle's liver is suffering from radiation damage.

Radiation lingers in the body for a long time after treatment, and continued gemcitabine treatments increased the sensitivity of her liver tissue to the radiation,
resulting in tissue damage over the last 3 or 4 weeks. A CT scan the last week of May showed the early beginning of the damage, but it looked more like a tumor at the time. Just 3 weeks later the damage had spread through both the left and right lobe of the liver, but following an absolutely straight line that fit the radiation beam and didn't match the expected growth pattern of either a tumor or damage due to loss of blood supply, the two other most likely diagnoses.

According to Michelle's gastroenterologist Dr. Dunphy, only 1/6 to 1/7 of her liver was affected. The best news is that the liver is really good at repairing itself, and should replace all the damaged tissue over time. The other great news is that all Michelle's liver function markers are at or near the normal range, indicating that the liver damage is not making her sick, other than causing massive amounts of pain.

In the process of ruling out other causes, they checked the blood supply to her liver and the CA19-9 tumor marker. No clots were found, and her CA19-9 dropped from 127 a month or so ago to 75! This is the same number that was 7998 back in January. Hallelujah! Thank ya Jesus! Amen!

In the mean time, Michelle's parents Ron and Sharon Beyer are driving up from the Phoenix area and are expected to arrive tonight. Dad is bringing his tool belt to help me with the deck - we're getting closer to finishing, and I'm hopeful everything will be done in a couple more weeks. (Ha! Michelle says, like that'll happen!) Oh ye of little faith.

Thanks all for your continued prayers. We're holding up well through this bump in the road and are still looking forward to our Caribbean Cruise in just 3 short weeks. We should know in a week or so if we'll still be able to go, so keep your fingers crossed and stay tuned for further developments.

Bill

Attention Prayer Warriors!

Prayer Warriors, it is time to kick it back up a notch. We're worried and Michelle needs your renewed prayers.

Over the last few months, things settled into a smoother pattern we thought of as "the new normal". Michelle was mostly pain free, and seemed to be gradually gaining energy. She was able to walk around the block and even took a couple of short hikes at a nearby nature preserve. Although she could only handle about an hour or two of activity in any given day, it was very encouraging that she was able to leave the house and feel more normal.

That largely ended on Memorial Day.

Early in the morning, Michelle woke up with startlingly severe abdominal pain. The sharp, stabbing pain was centered just under her breastbone and was annoyingly constant. After some debate and trying Advil without success, we broke out the narcotic pain killers that she set aside back in March, and was able to get some relief. The pain seemed to gradually diminish over the next week, and we were hopeful that it was just a fluke.

Right around this time my knee pain was rapidly reaching a crescendo, culminating in my June 4 arthroscopic surgery to repair my torn medial meniscus cartilage. Michelle did a great job of helping me with my recovery, but her abdominal pain started coming back again. This time, we attributed it to a pulled muscle because unlike the Memorial Day pain, it only really hurt when she used her abdominal muscles.

Over the last 2 weeks, the pain has slowly ramped up again to the point where just shifting positions in bed or walking across the room is agony. She has been working with a Physician's Assistant, who agreed that the pain was probably muscular.

Yesterday, however, the PA was off duty when Michelle went to the cancer center for her scheduled IV hydration (she usually receives hydration 2 days after each chemo treatment) so Michelle's oncologist Dr. Marschke came by to see her. He took a closer look at the CT scan they ordered after Michelle first reported the problem, and is concerned that this pain may be related to one of 3 liver tumors shown on the scan. We were aware of one tumor that appeared on the December PET scan, but it was unclear to us whether the other 2 are new. No tumors showed up on the PET scan a couple of months ago, which means no metabolic activity was detected in that test, but it doesn't mean the tumors were gone.

Dr. Marschke ordered another CT scan for this Saturday, this time with contrast dye to help show more detail of the tumors, particulary the one in the vicinity of Michelle's current pain. We have an appointment with Dr. Marschke on Tuesday to hear the results.

This is where you come in, prayer warriors. Michelle needs your prayers for support and encouragement, and above all for healing. Thank you for all your prayers in the past. Michelle and I believe that they have worked wonders - we just need a little more of that wonder right now.

God Bless,
Bill

P.S. It's been two weeks, and I've healed quickly from my surgery. I overdid it a little last weekend, but this has been a good week and I'm well on my way to full recovery.

Feeling Better

I had my sinus surgery yesterday. It went well. The cheek sinus was completely blocked with infection. So they cleaned that out and made the opening bigger so it will drain better.

My pulled muscle is feeling better too. It was really painful which scared me. My abdomen muscles are still weak from all of the time in bed.

Bill went to work on Wednesday and his knee is doing much better. He visited the therapist and has some additional exercises to do for his knee.

Have a great weekend.
Michelle

Week of Surgeries

Bill's knee surgery last Thursday went well. He spent the weekend in his recliner with his knee elevated. The surgery center also sent us home with a contraption to ice and compress his knee to keep the swelling down. We had to make a couple of trips to the gas station to get ice. Scotty, our cat, also found out he likes to lick ice. He also liked to walk on the contraption which would push the buttons. Bill is up more today, but is experiencing some pain and is uncomfortable.

I think I pulled a muscle. I have a pain in my upper abdomen that doesn't hurt if I am sitting or laying, but if I get up or walk it is hurting. It is hard to deal with things like this. It may be a pulled muscle, but your mind always goes back to the cancer. So we shall see if it gets better the next couple of days.

I am having sinus surgery on Thursday, so keep me in your prayers. I have a sinus that is infected, but doesn't respond to antibiotics. It is a tricky balance. On one hand you don't want to due unnecessary surgery on someone with cancer, but you don't want to have a raging infection in someone whose immunity is lower.

Keep my friend Karen in your prayers. She is dealing with some serious health issues. Also keep my Mom, Sharon in your prayers. She still in the clinical trial. It seems like it is evaluated every month. So in her mind, this could be the month that her tumors haven't shrunk enough and they take her out of the trial. That is alot of pressure over something you have no control over.

Have a peace filled week.
Michelle

This last week was a tough one. I started having some pain on Monday and started taking some pain medicine. On Tuesday, they did a CT scan to see the stents were still in place. The stents were fine. It was what the rest of the CT scan said that was scary. It talked about 3 spots in my liver, my spleen was enlarged and there was fluid in my lung cavities. I was in bed all week because of the pain. I must say I was pretty down all week too. Could this be it? I really lost my faith. I started feeling better on Saturday, taking less pain medication. On Sunday I only had to take pain medication at bed time. I still have a little pain, but it is getting better. I learned a good lesson. Really a couple of lessons. First, God is with me always. Second, take One Day at a time.

Please keep Bill in your prayers. He will be having knee surgery in the next couple of weeks. Also please keep my friend Karen in your prayers. She is having some serious health concerns.

Have a peace filled week.

Michelle