Salt Lake City---The Good News & The Bad

We were anxious for our appointment with the famous doctor that just transferred to Huntsman from the number one Myeloma research facility in the country in Little Rock, AR.

We met with him for a couple of hours most of which was spent by him going through the chart and making notes and asking us very clinical questions and making notes.

I had my notepad in hand and ready to record anything important he had to say. When he finally spoke he indicated that Pete's condition is serious. He said it was obvious that while he had survived, he couldn't continue to do so on on his current course.

He didn't give us the results of all the tests that had been run and when I asked about it he stated that we would be given copies. We'd never before received copies of any tests other than general labs so I was surprised.

We had found the Huntsman Cancer Center to be very impressive because it had an air of calmness about it and there was no wait time for anything. There weren't staff members running around and there was no noise. It was almost as if we were the only patients there except that it was obvious that we were not. They were also very much more detailed about everything they did. We always thought we were in good hands in Roanoke and felt comfortable. I'm not saying that we're not in good hands, but the level of detail on every test and every encounter with personnel there was just several times higher a level as if they looked at things much closer than anyone has ever looked before.

The doctor said that the tandem transplant is the best course of action to stop the spread of the Myeloma and to give him the best quality of life. We had already met with a person that was assigned to us to explain the entire process previously. We were told that this whole process would be done on an outpatient basis.

During his previous transplant the rules were that you had to stay in the hospital a minimum of 30 days and then had to stay at the hospitality house for a minimum of 30 days and if you did well you could go home and continue working with your local cancer center for follow up as needed.

For this new process they give you what they call DPACE, which is a combination of chemo and drugs to treat the Myeloma. Then they give you the growth inhibitor so that you can produce the extra stem cells for collection.

In Richmond when this was done their goal was to collect 4 million stem cells. Here, they want to collect 20 million! This is so that they have enough for two transplants whether you are doing a tandem now or not and so they have some leftover in case there is anything they can do in the future for you.

The more chemo and treatments you have during the course of the disease, the less the chances for a good 'harvest' of stem cells. If you have had a collection previously, as he did with the original transplant, this also lessons your chances.

I asked if there was any way to tell from the tests that were done or from any test what his chances are. I was told there is not.

The doctor said that right now he has been off his Velcade/Doxil/Dexamethasone for a month and that if he stays off for another 1-2 months that will increase his chances at a good collection. The collection will be the key. If they can only collect enough for one transplant, then they can only do one. If they can't collect enough for that, then they will have to try other drugs to see if they can collect or in some cases they cannot collect.

So, if he stays off the chemo for another month or two he will have to immediately go into transplant. If he goes back on chemo to stay alive, he will decrease or possibly rule out his possibility for transplant.

Now here's the real kicker. Pete has a Medicare supplement, but Medicare rules have to be followed. Medicare rules are that you are only allowed one transplant per lifetime. That's why Richmond would not do the tandem transplant at the time even though that was recommended. They told us at the time that it was a $100,000 operation and that unless we could provide payment up front for that they couldn't do it.

We tried our best to make it clear to Huntsman that this is what we were told, but they told us to come and visit and get tested and then they'd see what could be done. It seems that this information just missed the target and they didn't have any idea that we'd had one done with Medicare.

So after all this week and all the stress and expense of this trip that we really couldn't afford to make at this time, we were told that we would need to find a way to pay for this. I have not yet been able to get a firm number on just what money is needed. We had different information provided and I want to get the facts.

Peter is of the opinion that it won't happen and while he was so elated at the possibility of feeling great again like he did last summer that he will always feel tired and useless and having to get chemo twice a week until his body can't take it anymore. It is so depressing to see him fall from such a level of hope and happiness to distress. I will do anything to make this happen.

Salt Lake is a great city that we both liked and felt very comfortable about. Jobs seem much more plentiful for my type of work than in Roanoke. I am willing to relocate there and take a full time job there to be close to the hospital. I think it would be much better to be there for the entire process and follow up rather than travel back and forth.

What would we do about our house here? Try to pay the mortgage and pay for an apartment there? What about our pets? We can't bear the thought of not being without them. Peter is very attached to his kitten and our other cat is very old and the thought of it dying away from home and while my son is living in China is worrisome. Peter loves his dog, but it is used to being outdoors and I'd hate to confine three pets to an apartment not to mention how would we get them there? Who would look after our house here? I don't think I could clean it out of our belongings and get it sold very fast with all that's going on and doing it alone.

We've been very lucky to date and God has taken care of us in every way though all of this. Even when things were bad financially, He always provided. Things are very bad financially right now and we don't know what to do about this decision or if there even is a decision. The only way I can keep my sanity is to trust that God will show us what we should do.

I am busy contacting all sorts of organizations to explore all options right now. Our new oncologist here is on vacation back to India for three weeks so we won't see her or be able to talk to her until late August.

I will post any new information here.

Beth

Salt Lake City-Pt. II

Salt Lake City is a wonderful city. Several people told us that it is a great place to visit. It is very impressive and we could find ourselves living there easily.

The city is very clean. We even drove around to other areas in trying to find something less than perfect and didn't manage to find anything that wasn't nice.

It's amazing just how well things are organized and flow in this city. It is laid out in typical Midwest fashion of an easy to follow grid system of streets north and south and east and west. The lights are timed well and public transportation is how it should be everywhere. Traffic was very light even during rush hours during the week.

One of the biggest things we noticed was how nice everyone was and the lack of nasty or stressed out people. There was no horn honking, yelling, or any act of aggression. Maybe everyone there is really a robot. Westworld?

We had to be at the University Hospital at 7:30 Wednesday morning for cardio and pulmonary tests that lasted until late morning. Both went well. We had a nice lunch back at the cancer center at one of their wonderful restaurants.

On the first morning we picked up a 24 hour urine kit, which we turned in after lunch on Wednesday. I was a little concerned because they did lab work and wouldn't let me back in the room with Pete.

All during our all appointments each place had taken him back the minute he arrived with no waiting which was very impressive. This time he was back there for well over half an hour. We had our next appointment with a patient consultant and were risking being late. I later learned that they don't just take a few vials of blood as in our past experience. They take a dozen or more and then make you have some juice and cookies and rest for 15 minutes to recover as you do when you give blood.

Thursday we had off and I spent the day at the mecca of family history at the LDS Family History Library. I didn't take anything with me and didn't have any goals in mind, but wanted to get a feel for what was there that couldn't be accessed online. I would probably need to spend a week there looking at records on microfilm that had been sent to them from all over the country. Perhaps some day I'll do just that.

Pete needed the rest so he slept most of the day and watched a little t.v. When I arrived at the room late in the afternoon we had a bite to eat and then went out to do laundry and visit some gun shops. We spent the rest of the afternoon and evening driving down Redwood and stopping at every interesting pawn shop, gun shop, and thrift store.

We rounded out the evening with a planned trip to an old drive-in restaurant that we'd seen on Diners, Drive-ins, and Dives on the Food Network. We happened to be there the same time as a mini owner's car club was there and several other people that also had seen the show. We enjoyed an elk burger, some great fries, and a fantastic milkshake and Lime Rickey drink.

The Salt Lake City Story-Pt. I

A lot has happened since the last blog posting.

Our first appointment at The Huntsman Institute was on Tuesday, July 15, 2008. On the Thursday before we felt that we had exhausted all efforts and were just not going to be able to make the trip. We had bills to pay and boarding our two cats and dog were added expenses not to mention lodging, gas, food on the trip.

We are very conservative and knew we would drive no faster than 65 mph and be able to maintain 35 mpg in our PT Cruiser with the 5-speed. We knew that we would take a cooler with our own drinks and snacks and would require minimal eating out.

This was still a huge undertaking. We sent an email to our patient coordinator to let her know that we just didn't think this was going to be possible.

One of the differences is that when we went to Richmond, VA there was a hospitality house. They have no such thing and you are required to stay at commercial motels. Many of the motel chains do offer patient discounts of $10 per night.

On Friday we were persuaded to make the trip no matter what. The original testing was scheduled for the last week of June, but no one had notified us of this. Had anyone asked about timing I would have let them know that the last weekend in June and the 4th of July holiday were out because of the events in Roanoke that we NEVER miss.

I just happened to call about scheduling a few days before we were scheduled to be there in June and found all this out. They then scheduled the tests for the Monday after the 4th of July holiday. The charity organizations that handle airlines told us they needed 21 days advance notice and couldn't help us for that. So at that time we moved it to the next week and contacted the two charity airlines to begin the process.

As it turned out, after we got the appropriate forms, the one charity ran out of funds for the month of July. They also have a program where people can donate their frequent flyer miles, but it seems that not enough people are donating miles lately.

The second charity had forms that needed to be completed by our local oncologist. Our oncologist was in the process of leaving the clinic and we were in the process of getting assigned to a new one. By the time the charity got the forms to us, we only had two business days to turn these around. I hand delivered them to our local office, but neither doctor was in the office that day or the next. The new doctor completed the forms when she returned to the office, but she failed to fax them. By the time it was realized that they hadn't been faxed and actually were faxed, the deadline was missed for the 21 day notice.

So, through borrowing some money and having a generous person donate some money, we boarded our pets and started getting ready to drive to Salt Lake City since it sounded like we should avoid rescheduling again.

Originally we would have been getting ready to leave on Friday and leave early Saturday morning. Instead, we spent all of Friday trying to either convince our patient coordinator that we just couldn't afford this trip or finding a way to make it happen. Therefore we spent Saturday getting ready by finishing up things around the house and on the computer, doing laundry, packing, boarding pets, notifying neighbors, stopping the mail and paper, etc. We weren't ready to roll until dinner time. I thought about just getting a good night's sleep and leaving very early on Sunday, but Pete decided that we needed to get some miles under us. So we had a good dinner and hit the road.

After we decided that we were going to be driving, I looked at Google to get a feel for our trip. I didn't print out the directions or really pay any attention to the route we would be taking. I also had an opportunity to buy a GPS at a good price and did so. I didn't play with it when it arrived two days before our trip or figure it out. Can you see where this is going?

When we were ready to roll, I entered our hotel address in Salt Lake into the GPS and set it up in the car. I had also quickly printed Google directions before we left and brought our atlas. We always have maps in the car, but not for western states.

The GPS told us to go I-81 to I-64. I generally knew from glancing at Google that we were going to be going through KY and West until we went up to I-70 or I-80. I-80 goes into Salt Lake.

After a few hours Pete got concerned with our travel. He felt we were going to far north. We were both trying to get used to the screen in the window and voice. We ended up questioning what it was telling us and sort of charting our own course.

All of this could have been avoided if we had followed our normal travel procedures and looked over our route a day or two before leaving. This whole trip was so screwed up from the beginning and rushed at the last minute after our decision to scrap it that this just never happened. We won't make that mistake again.

So we ended up working our way across the country and getting up to I-80 and going through the most boring state of Nebraska, getting caught in a terrible storm with hail, 60 mph winds, and driving rain, passing through Wyoming, and finally getting into Salt Lake City at 3:30 AM Tuesday morning.

We spent two nights in inexpensive hotels. We stopped at a private military collection museum in Nebraska. We got good fuel mileage. We just had a lot of ground to cover, a late start, and were tired before we ever left Roanoke.

The Quality Inn where we stayed was nice enough not to charge us for the night for getting in so late. We had a couple of hours of sleep, no breakfast, food or drink, and arrived at the cancer center just in time for our first appointment.

Tuesday we met with a social worker who wanted to know about our history, support system, how we've managed, and wanted to know how we'd manage in the future. She wanted to know what our needs would be.

Then Pete had a Pet Scan that took 3 hours. That is a CT scan with sort of a dye that they put through to see all your parts. After that we went to one of the two restaurants in the center and had a late lunch/early dinner. We'd heard it was outstanding and it certainly was. This was the first Pete had anything to eat or drink all day. Then we went back to the radiology department where he had an MRI. We didn't get out of the center until 9:30 that night. We were exhausted and ready for sleep.