Maintenance Therapy

All has been well lately. Doug is eating well, and his weight is where it should be. He finished six courses of 25 mg Revlimid and weekly dexamethasone, and is on his rest week now. On June 5 he starts maintenance therapy, which is 10 mg Revlimid daily and no dex! He won't get any rest breaks from the Rev. The oncologist will do a MM blood panel every two months to see that things are under control. Doug will still be getting a Zometa infusion every six weeks since he has multiple bony lesions.

I am very glad that the heavy duty Revlimid is over; Doug has been so easily fatigued. Hopefully he will have a bit more energy with the lighter dose.

The only problem right now is hip pain. The same hip that had radiation last November. Doug has no pain unless he walks over two blocks or is on his feet a lot. Once he sits for a while, the pain goes away, so we have been trying to ignore it. It's a bummer that we can't go for walks together. If it gets worse we will have to address it.

We are moving to a 'new' house - one with less upkeep. We'll be less than a mile from where we live now. Once we get settled, we will have almost no yard work. We think it is best that we move while we can - before a new crisis hits. Worrying is not good - planning ahead is good.

Doug and his brother are going on a river float trip on the Arkansas this Friday. His brother Jeff will be fly fishing; Doug will be on the boat just enjoying the trip and the scenery.

Love to all.

"Your life is a journey you must travel with a deep consciousness of God."  

1 Peter 1:18 

EUS results - good news

Doug had the endoscopic ultrasound (EUS) done yesterday in Colorado Springs. Results are good - no signs of any mass in the head of the pancreas or in the bile duct. A small portion of dilated bile duct was noted, but not thought to be a problem. Some scarring could be seen in the pancreas, most likely from the severe case of pancreatitis Doug had in 2010. No signs of active pancreatitis. No major abnormality seen! The gastroenterologist said he could not explain Doug's elevated bilirubin level, or the weight loss. He recommended a repeat regular ultrasound in a month, and labwork including a CA 19-9. He did take one biopsy in the stomach, where he saw some gastritis; the biopsy is to check for H. pylori, a bacteria that can cause an ulcer.

The sedation this time was Propofol - yes, the drug that Michael Jackson was taking. They have gone to this instead of using Versed because the recovery time is so much faster. It does require having an anesthesiologist to monitor. We were impressed with the entire team at Penrose.

We also saw the cardiologist last Monday, because of Doug's continuing low blood pressure. He cut the dose of the Coreg in half. He noted that Doug has lost 30 pounds since last year, so now he does not require the higher dose.

The unexplained weight loss is still troubling, but if he can maintain this weight, I will be happy. No more 'Budda belly'!

For now we will just enjoy life in the slow lane.

Blessings to all.

Neck Pain - not cancer

Last Monday morning Doug woke up with neck pain, hurting but tolerable. The next day, Tuesday, he took his Dexamethasone (steroid) - no neck pain. No pain Wed. Thursday (when the Dex wore off), the pain returned with a vengeance. He took a muscle relaxer, which did not do much. Thursday evening he finally took Oxycodone (a fairly potent pain med); that helped some, but it still hurt. More Oxy during the night. I started thinking - what if this is the myeloma acting up? What if this is a pathological fracture? I had these thoughts even though the myeloma numbers look good right now. (Remember back to last fall when everyone thought Doug's hip pain was 'just arthritis'?)

So this morning we called and got in to see our most excellent nurse practitioner. She listened carefully (I love that about her), examined Doug, and said she thought it was 'torticollis' - basically a severe muscle spasm. But she said "since it's Doug, I'm going to order x-rays of his neck to rule out anything going on in the bone."  She showed us the x-rays (I am a retired radiation therapist and am used to looking at x-rays) and we could see lots of arthritis but no obvious lesions. She will send them to be read by the radiologist, but it really looks like we dodged the bullet this time. She recommended he stop the muscle relaxant and the Oxycodone since it wasn't doing much, and start taking lorazepam (generic Ativan) 3 or 4 times a day instead. Right now he is relaxed enough to take a nap - good!

When we got home I was surprised to find how tired I felt. Of course - I was all geared up for battle, ready for another course of radiation therapy, etc. Rationally, I shouldn't have been, but my emotions responded. Crisis averted, whew, I slumped.

This coming Monday, we are going to Colorado Springs to the cardiologist, to get Doug's heart meds adjusted. His blood pressure is still lower than it should be, resulting in some dizziness. This coming Thursday, we drive back to the Springs for Doug's endoscopic ultrasound.

Here's a tip that I hope might help someone - you can make an easy muscle warmer by putting two pounds (or a little less) of raw rice in a tube sock. Tie the end shut and heat in microwave for one minute, give or take. Easy, cheap and works like a charm.

On this Good Friday, I am humbled and awed by how much God loves us.

Blessings to all.

Roller Coaster - feeling better again

For the last three days Doug has been able to eat normally; he even gained a pound. This is a huge relief, and I am very thankful. There is  no explanation for the sudden change. I attribute it to all the prayers being said for us.

I really don't think this 'stomach' problem has anything to do with the myeloma. Hopefully the EUS will shed light on what is going on.

All these ups and downs are like a roller coaster ride, and not a fun one. I think I am being taught patience and endurance. Both Doug and I have learned so much over the course of this journey - lessons that will benefit us in the long run. And these lessons will allow us to help others too.

Blessings to all.

Waiting for EUS

We finally got the EUS (endoscopic ultrasound) scheduled. Doug called the gastroenterology office three times to ask about it and make sure we hadn't fallen through the cracks. It isn't until April 12. A long time to wait. In the last few days, Doug has had that "feeling" in the upper abdomen again. If he eats too much he feels bloated and uncomfortable. He still has an appetite but eats smaller amounts. He is losing weight; good thing he had a few extra pounds to start with.

 This could be something relatively simple like a stricture of some kind. But we both know it could be more serious. We are not borrowing trouble, but we are not looking through rose colored glasses either.
Waiting when you really want something to happen is so hard!

Every day we put our trust in Christ, and we have His Peace.

Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.   

Matt 6:34  The Message 

Gastroenterologist visit

Today we had the consult with the gastroenterologist specialist in Colorado Springs. Since Doug is feeling back to 'normal' now, the doc couldn't begin to say what was wrong. But he did say the ultrasound report should not have used the word "obstruction". He said if there had really been a true obstruction, Doug would have ended up in the ER and been very very sick. He feels it could have been a stricture of some kind.

The gastroenterologist said that testing would be a good idea, to rule out anything serious, since there was some dilation of the bile duct and pancreatic ducts. We agree. The doc laid out choices, starting with the least invasive - MRI. Doug can't have that due to his pacemaker. Next choice was CT scan with contrast. Doug can't tolerate contrast due to compromised kidney function. That leaves "upper endoscopic ultrasound" known as EUS. He said this is the gold standard test but it is invasive so they usually do the other tests first.

Think of colonoscopy, with differences. After IV sedation, a tube called an endoscope is inserted via the mouth. On the end of the endoscope is a camera and an ultrasound transducer. Images are more accurate and detailed than traditional ultrasound because the transducer is close to the organs.

Only two physicians out of this speciality group do the EUS, so we have to wait for it to be scheduled. That's okay.

Feeling Better

Starting the last two days, Doug is feeling a lot better. His blood pressure has stabilized and the discomfort is less. He is going on short walks with me. We think maybe the obstruction is resolving on its own - hope so!

We didn't get in with the gastroenterologist who comes to Salida, but we do have an appointment with one in Colorado Springs, for next week. Even though Doug is doing so much better, we will keep that appointment.

In trying to get an appointment, we learned that before one even gets an appointment with a specialist, the insurance company has to pre-approve it. I remember the days when physicians used to run medical care. And prescription drugs were not advertised on TV. I even remember when it was unethical for lawyers and physicians to advertise their services.

Doug had a repeat CBC blood test on Monday - his counts are up enough to start back on chemo.

Love to all.