Restaging day

Yesterday was the marathon day of restaging tests. We left home at 6:00 a.m. and got back at 9:00 p.m. Roads and weather were clear. Our GPS unit took us on a rather interesting tour of a ghetto-like area and downtown Denver on the way to the clinic. We saw four panhandlers on street corners, and two bag people with shopping carts overflowing with plastic bags. The testing took place at both Rocky Mountain Cancer Center and Presbyterian/St. Luke hospital. They are two separate buildings but only a block apart. P/SL is a really old hospital in the inner city so we were leery of going there -- but our experience proved it to be a great place full of caring highly skilled professionals. Everyone introduced themselves (sad to say, it doesn't always happen in the medical field) and gave us a good explanation of what they were doing. When we got lost we were escorted cheerfully to the right place.

We met first with Vicki, the transplant coordinator. She answered any questions we had and even showed Doug what the central line venous chest catheter looks like (see photo). It has three ports that will hang out of his chest; he will have it for about 8 weeks. That doesn't get implanted until March 6. We also met with the social worker and the financial coordinator who works closely with the insurance company. We got the transplant manual - a big book full of everything we need to know and pages for me to log "events".

Doug's first test was pulmonary function and I got a photo of him in the chamber. He said he had to blow until he thought he was out of air, then the tech told him to blow more! They used room air and then some mixture of gas also. Next was the sinus CT scan to make sure he doesn't have a hidden sinus infection. Then the echocardiogram to examine his heart. I got to stay in the room and it was very interesting to see Doug's heart beating, see the valve flaps open/close. The tech measured the heart chambers, blood flow and other stuff. Then off to X-ray again for the chest X-ray and skeletal survey. That took over an hour and Doug said the tech took x-rays of almost every bone in his body. That is to see how many bone lesions he has; we know it is a lot. Then back to the clinic for the rest of the tests. Weigh/measure, urine test, EKG, blood draw -- 12 tubes!

Doug said these above mentioned tests were not too bad, but they saved the rough one for last -- the bone marrow biopsy. I got to stay in the room for this too. He has had one BMB before, in the oncologist's office, and was not looking forward to another one. However at Rocky Mtn Cancer Center they use sedation: in addition to injecting huge amounts of lidocaine, they hooked up an IV with versed and fentanyl. Versed is a drug that makes you forget ("versed vacation") and fentanyl is a narcotic painkiller. The combination is called "conscious sedation". The first person who tried to do the BMB was a nurse practioner who does most of the BMB's for the clinic. She mentioned that it was more difficult with myeloma patients because their bone structure is altered. Well she tried three times and just could not obtain the core sample or aspiration. She kept checking with Doug to see if he was in pain and twice asked the assistant to give him more fentanyl. Finally she gave up and asked a doctor to come in and try. He also had trouble but after a while he got it. They said he was going to be pretty sore due to the extra "drilling".

This morning he had to take one of his morphine pills, which he hates and almost never takes. He's napping now, poor baby.

It was a long drive home; we arrived safe but tired. I'm not a night driver but said a prayer, especially when it started snowing. The snow stopped, and God delivered us back home. These test were very comprehensive and took all day. Doug was a trooper, no complaining. The purpose of all this is to make sure he is healthy enough to undergo the transplant procedure, and to "restage" and check the status of the disease after the initial chemo. We are really impressed with the team who will be taking care of Doug and feel we are in good hands.

Thanks to Kathy Lentz, our wonderful neighbor who came over and cared for the dogs. Now we get to resume our lives until we go back on March 5.

Out hiking

This picture was taken by our youngest grandson Brendan, age 12, as we were out on a hike. Part of the Sawatch Range is in the background. We were only a 15 minute drive from our house. Sorry, I couldn't get Doug to take off the hat. This was one of those wonderful glorious days when we almost forget there is anything wrong. Life is good!

Well, we have to leave for Denver at 6:00 a.m. Big day of testing tomorrow.

Gratitude

As we go forward on this myeloma journey, we find much to be grateful for.
The first couple of weeks after diagnosis, I was a basket case. Doug was stoic, not showing much emotion. I wondered how we would ever cope with this cancer; it just seemed overwhelming. One day I just surrendered and told God -- You handle it because I can't. Although I wasn't much of a bible reader at the time, I remembered the bible verse: "I can do everything through him who gives me strength." Philippians 4:12-14 My sister even gave me that quote on magnetic sign to put in my kitchen.

Well God did give me strength, and then some. Even though we wouldn't wish this cancer on anyone, we have received gifts along with the cancer. We have a renewed faith in God, a stronger marriage, have found a very supportive church, and have made wonderful new friends in this community. (And are blessed to have treasured old friends too.)

We now have a "new normal" that is mostly happy and joyful. We have re-learned to appreciate the ordinary details of life. Living where we can look up and see majestic mountains doesn't hurt!

My cousin Jan Holcomb sent this to me:
If God brings you to it, He will bring you through it.
Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful moments, trust God.
Every moment, thank God.

We get the schedule

We got a packet of information from the transplant coordinator. So we now have a schedule for the coming events.

Feb 20 is the "restaging". The following is all on one day:
Meet with coordinator Vicki.
Pulmonary Function Test
CT of sinus
Chest X-ray
Echocardiogram
Skeletal Survey (X-rays of mulitiple bones)
Bone Marrow Biopsy
Lab work and urine test
EKG

This time the dreaded bone marrow biopsy will be done with IV sedation -- yea! Last time there was no sedation and Doug was not looking forward to having another one. This will be a long day of testing, but we do get to go home afterward.

We have to be back in Denver on 3-5-09 at 8:00 am for (another) history and physical and signing of consent forms with Dr. Matous. Then the next day Doug gets the "triple lumen catheter placement" in his chest (also known as a "port"). This is done surgically but is a relatively simple outpatient procedure.

We will be in Denver from 3-5-09 to 3-18-09. It looks like this is the time period when they give drugs to mobilize the stem cells for collection, and the actual collection. We also will have the mandatory patient and caregiver class. Then we go back home, returning on 3-26-09 for the high dose chemo and subsequent stem cell transplant. We'll have to stay in Denver near the clinic for at least 30 days this time -- until Doug's immune system recovers sufficiently.

The stem cell transplant is done via the port, not surgically. Doug is having an "autologous peripheral blood stem cell transplant", using his own cells. You can click on the "Links of Interest" at the top right for more detailed information.

For now we are going to enjoy the next few days at home. The grandkids are coming tomorrow for a quick visit -- that is excitement of a different sort!

Consult with stem cell specialist

After talking to Dr. Miller again, Doug agreed to see the stem cell transplant specialist, Dr. Jeff Matous, at Rocky Mountain Cancer Center in Denver. We saw Dr. Matous on 2-6-09.

Dr. Matous felt that Doug has had "an amazing response" to the initial chemo. He explained that Doug has options:
1. Stay on 'regular' chemo and no SCT (stem cell transplant). The downside of this choice is that the drugs lose efficacy over time: the cancer cells get 'smart' and develop a resistance to the drugs. Then other drugs are given. Also, the side effects of the drugs usually worsen over time.
2. Harvest Doug's stem cells now and then wait until later to do a SCT.
3. Harvest the stem cells now and go right into the SCT. Dr. Matous feels that #3 is the best option. He explained that because Doug is in good shape now, he will better tolerate the SCT prodecure, and it will give him the best chance of a good remission. According to the stats, after a SCT, the average remission is two to five years before the disease comes back. But then there are options for treating it again.

Doug decided to go with option 3 - doing the SCT soon.

Dr. Matous did not go into all the details at this visit, but we know Doug will lose his hair due to the high dose chemo. It will grow back. There are other fairly serious side effects and I'm sure those will be explained in detail later. Doug will have to undergo a whole series of tests and procedures to make sure he is healthy enough to have the SCT since it will be a jolt to the body. That includes another bone marrow biopsy, not something Doug looks forward to.

Dr. Matous did say that the SCT will be done on an outpatient basis -- at the Rocky Mtn Cancer Clinic, which is on the Presbyterian/St Luke medical center campus. Only patients who have a 24/7 caregiver (that would be me) can do it as outpatients. We will have to stay in Denver for at least 30 days.

I am writing this on 2-12-09. We got a call this afternoon from a member of the transplant team -- the social worker. She is going to do the "psychosocial interview" with Doug by phone tomorrow since we live a distance away. She said this will take about an hour and is a mandatory part of the SCT preparation. Seems that mental/emotional health is checked as well as physical! Actually it is great that they want their patients to be well prepared.

This is going to be a big deal, but at least we have a plan of action. Now that he has decided, Doug is working on keeping a positive outlook although there is understandably a bit of trepidation.

Good response to chemo

12-18-08

Doug has had an excellent response to the oral chemo -- Revlimid and Dexamethasone. His pain is gone and his blood work looks good, kidney function is good. His cancer numbers are way down!

For those of you who want details: Doug's IgA was 2,296 at diagnosis; now is 156. His Lambda light chain was 3,510 at diagnosis; now is 38.9, still a little elevated but not too bad. He is feeling pretty good now.

We are so thankful for all the people who have been praying for Doug -- that is every bit as powerful as the medicine.

Dr. Miller wants Doug to consider the next step: high dose chemo and stem cell transplant. Doug is not sure he wants to do that; there are risks and side effects that sound daunting. But he is going to think about it. More on that later.

Here is a photo of Doug in Dr. Miller's office on one of our now routine monthly visits. He is getting the biophosphanate drug Zometa to strengthen the bones. It takes about 30 minutes to infuse via IV.

We buy a house

This is another detour from the medical part of the Myeloma journey. We liked Buena Vista so much that Doug started saying "We should buy a summer house here." The first time he said that I replied: "You're crazy." I sure had no thoughts of settling down after only a year of full time RV travel. Well he persisted (those of you who know Doug know how enthusiastic he can get) so we went to look at houses. The idea of getting a house grew on me -- just a summer house. We found one we liked and put an offer on it.

Then we got the cancer diagnosis. The seller graciously offered to let us out of the house deal, but we knew this was no time to be galavanting around the country. I would have preferred to live closer to Denver, where we have our son and his family, plus Doug's brother and his family. Well Doug absolutely did not want to live in Denver. BV is 125 miles from Denver, a 2 1/2 hour drive over the mountains, but doable.

So in the midst of dealing with cancer, we bought a house in September 2008. Talk about stress. We really feel that God set us down here in Buena Vista. This is a very caring community. We have made good friends, have great neighbors, and we have found a wonderful supportive church.

Our little house is within walking distance of the library, post office, restaurants, and the historic downtown area. We have a medical clinic and beautiful hiking spots a few minutes away by car.

We have always wanted to live in Colorado -- just didn't think it would happen this fast. Our RV is in storage; hopefully we will be able to travel again.

Buena Vista

We'll take the first detour on our Myeloma journey so I can tell you about our town. We came to Buena Vista in June of 2008. We immediately liked the small mountain town (pop 3,000). The first things we noticed were the beautiful scenery and the friendliness of the people.

When we arrived at Valley Mobile RV park, a man pulled in right behind our rig, pulled a window from his car and said "This fell out of your RV and I have been trying to catch you!" We looked, and sure enough, one of our windows was missing! He had seen it fall out, stopped to pick it up and followed us until we stopped. We were grateful for his kindness. Just as we were trying to figure out how to put it back in (duct tape fixes all), the workampers at the RV park came up; Don Cox said he had a pop rivet gun and proceeded to put the window back in. It worked and looked good as new. Now we had two things to be grateful for.

Buena Vista sits in the Upper Arkansas River Valley, a sheltered spot between mountain ranges, smack dab in the middle of Colorado. One side of town borders on the Arkansas River; in summer many rafters and kayakers come to enjoy the white water sports. In the photo you can see rafters in the river. Hunters, mountain bikers and hikers also frequent our area. There are ski resorts within an hours drive to the north and south. BV is 8000 ft elevation; by contrast, Denver is 5400.

We have "town deer" that live right in town. The first time we saw a doe in a front yard, we did a double take - no, it wasn't a statue. The deer are actually a bit of a nuisance but they do add to the charm of the town.

You can see a couple of the historic old buildings that are downtown. The green one is now a restaurant; the old courthouse with the cupola is now a museum. The view looks east toward the river and the hills. The awesome Collegiate Peak mountains are to the west of town.

Buena Vista is in an area called the "Banana Belt of the Rockies", so called because it usually has a mild climate. Summers have low humidity, and it always cools off at night by about 30 degrees from the daytime temperature. Winters have snow, but usually measured in inches rather than feet, and usually a light dry snow. Last year (before we came here) was an exception -- BV got hammered by 4 ft of snow. We hope that was a once in a century event. So far this year we have used a broom instead of a snowshovel.

When Doug feels up to it, we look forward to doing a bit of hiking.

The Oncologist

Jan Ommen, our family nurse practitioner, had done her research even before she told us the cancer news. She recommended a hematologist/oncologist in Denver -- Dr Allan Miller. We got an appointment with him as soon as possible: August 25, 2008. By this time Doug was having more pain, and was taking some pretty strong pain meds (which really didn't help much). So Doug was not driving due to the meds.
This was our first trip over the mountains to Denver since we had been in Buena Vista -- and I was driving. (You have to remember we were flatlanders most of our lives.) I prayed for a safe trip and we had no trouble.

Dr. Miller told us that Doug did indeed have Multiple Myeloma. He ordered a whole slew of tests in order to stage the cancer. And he did a bone marrow biopsy -- not the most pleasant of tests. Dr Miller decided that because of the extent of the bone lesions, Doug needed to be started right away on a biophosphanate drug. This is called Zometa and is very similar to what people take for osteoporosis. The Zometa is given by IV in the oncology office every month. The purpose is to strengthen the bones and prevent fractures.

Dr. Miller said that he needed to wait on some test results so he could choose the best chemo regimen. He told Doug to double up on the dose of pain medicine.

Beginning of this journey

Doug was diagnosed with a cancer called Multiple Myeloma on August 14 2008.

Up until this time we had been traveling and living full time in our RV. We had come to Buena Vista Colorado in June to spend the summer on the recommendation of friends.


Doug had been having some nagging pain in his ribs and back since the spring but a routine physical back in Nebraska had shown nothing. Well the pain continued so Doug made an appointment at a local clinic. He ended up in the hands of our wonderful nurse practitioner, Jan Ommen. Jan gave him some pills for inflammation but they had no effect. Doug returned to the clinic and Jan ordered some tests which showed a "high sed rate" in the blood which made her suspicious. So next a chest x-ray was ordered and that showed a mass in the chest. Next step was a CT scan -- the scan showed that the mass was not coming from the lung, but from a rib. The scan showed innumerable bone lesions that had a "punched out" appearance suggestive of Multiple Myeloma. Jan called us into the clinic to give us the news. It was a huge shock, just devastating.

Doug had a good attitude right from the start. He never asked "Why me" or felt sorry for himself. He just said "What will be, will be." We both knew that MM is not a curable cancer. We have since learned that in the last couple of years, new drugs and research have made MM a very treatable disease. I have come full circle from thinking "my husband has a fatal cancer" to knowing that "my husband has a chronic disease".