I'm sorry I'm late posting this but I almost forgot it. We made it home just fine but before we came home I came through Kingsport and stopped and got a radiation treatment. That makes 6 out of 10 that I'm scheduled to get. The reason for getting it is not to cure anything but to stop the pain that I'm having in my back.
We made the drive without any incidents happening. Just something that I have not done before even though I have wondered if I could do it, we made the drive from Little Rock to Kingsport on the same tank of gas. That is about 640 miles to Kingsport so the KIA is getting pretty good gas mileage.
I want to thank each of you for your comments in the blog, text messages, emails, and most importantly, your prayers.

We made it to Cookeville as we had planned and made it here at 6:45 p.m. We drove in rain all day so it was not a pleasant drive. We did stop and see my brother in Memphis and also my niece. It is so good to finally get to the room and be able to relax. I've been looking forward to that all day.

I really don't know where to start. Dr. Van Rhee's APN, that we like so well, whose name is Diane, is the first one we talked to at the clinic. I asked her first how was everything and she said not good. That pretty much sums it up. The myeloma has been going rampant since our last visit here early in November. I really suspected that things were not going well but when you see it on the images it is shocking. I debated whether or not to post some photos that I made on the screen of the PET scan showing how it was in September then November than December but I decided it might be better not to post them. Dr. Van Rhee said there's no treatment that he knows of that would help me. He also said that he did not think any of the car T-cell clinical trials would help me. The myeloma has become very aggressive and not just in my bones. The specialist that reads the PET scan last time mentioned there was an appearance of myeloma in my liver but this time there was no doubt it was myeloma in my liver. The nurse from UAMS even called after the tests were sent in last week asking if my local doctor knew that my liver enzymes were elevated.
The doctor recommended that I come off of treatment and go on to palliative care. We both do not disagree with that. I'm going to talk with my local oncologist and learn more about it.
I so much wish this blog entry could be better news. I sure do appreciate all of your support and your prayers and caring. It means so much to me and to Reta.

A reader of this blog ask me a question about the clinical trials that are available to me at Sarah Cannon Institute in Nashville. I thought someone else might be curious about it so I'm posting information on those two clinical trials. If you do a Google search on either of these numbers, you will be able to get more information on them. Both of them are Phase 1.

GBR 1342 101 (I could not enter this until March next year.)

BFCR4350A

We arrived for testing at the Myeloma Institute this morning at 6:30 and ended today at 6:30. We did get a four hour break during the day and we used it to catch up some on our lost sleep. I got a unit of blood today so that should help me feel some better because my hemoglobin was low.
I have decided that no matter what the doctor tells me tomorrow I'm going to try not to be shocked.
Thank you all so much for following along with us and leaving your comments, texts and emails.

We didn't go anywhere today and just stayed in the apartment.
Testing starts tomorrow at 6:30 a.m. but there will be blocks of time in the testing where I will have some free time. I would have preferred that I would be able to get it all done at once but my last appointment is about 3:30 tomorrow.
Thank you all for your nice comments and Joanie for your offer to help us get back home. We should be able to make it just fine but thank you.

There is not much to report today. I am still coping with the pain from the lesion in my upper back. I was scheduled for 10 radiation treatments on it but I was only able to get 5 before we left for this trip. The pain medication I take works pretty well until it gets up near the time that it is time to take more and it gets pretty painful. I was not having any pain at all from this area till about 3 weeks ago. I was hoping that the radiation treatments would stop it before I left to come on this trip.
That is all for now.... Jerry

We traveled today from Jackson to Little Rock. We were able to get an apartment from Home Away from Home but this apartment is at Palisades. It is a very nice apartment but we don't like it as well as we do the ones at The Lofts.
We stopped and visited with my brother in Memphis this afternoon. We didn't arrive here until after dark. During the next two days we plan on doing nothing but resting and relaxing and just enjoy doing nothing. My first appointment on Monday at 6:30 am.
I hope everyone has a good weekend.

We were disappointed to find out that I did not qualify for the car T-cell clinical trial. I did not qualify due to the having a mini-stroke stroke back about four years ago. The car T Cell therapy is apparently pretty risky. The research nurse told me that everybody was not suited for this treatment. The doctor was very nice and told me about other clinical trials that they had going on that I would qualify for. One of them they talked at length about was one that I could not start on until March of next year. It would require me to be hospitalized three days for the first treatment and then 3 days for the second treatment but after that I would not have to be hospitalized.
We didn't receive the answer that we were hoping for today but the door is not closed and we still have hope. The doctor felt confident that I could get on a treatment now that would slow down the progression of the myeloma. It has progressed very quickly in the month.
We will continue and go on to Little Rock for testing and then meet with Dr Van Rhee next Tuesday. We are spending the night in Jackson Tennessee.

December 14, 2017

We left this morning at 6:40 a.m. headed to Nashville. We are in Crossville now having breakfast. The place where we normally stop at Exit 347 was closed due to remodeling. We are both really nervous about what we will learn from the doctor today. Please pray that we will get good news today.

We took our time coming home from Cookeville and arrived home about 3:30. We saw plenty of fall color on the way to Little Rock but on the way back it appeared that most of the leaves had already fallen.
We will have to return to Little Rock the week before Christmas. We both appreciate so much you reading this blog and the comments and the prayers. Thank you all so very much.

We left Little Rock this morning about 10 a.m. We were not able to get away any earlier because after we ate breakfast and cleaned things up and got everything packed it was 10. We did get up at 6 a.m. with the anticipation that we would try to get an early start but it just didn't happen that way. Seems like it just takes forever for us to get ready to leave. We had a good drive and the traffic was not bad. Tonight we're staying in Cookeville because it got dark about 5:30 and we just didn't want to continue driving after dark. It sure feels good to be able to rest now since we've had a really hectic and tough week.
I want you to know I really appreciate the comments you have made in this blog. I also appreciate the email and text that I have received. Thank you all so much for the prayers. I don't know what I would do without you all.

The news we got today is not the news I wanted to hear. I don't know where to start telling the news I got from the doctor but I'll do the best I can. He said basically the treatment I have been on has not worked and the myeloma is very aggressive and has advanced. I am on the strongest treatment now that I am suited for. That is the treatment that matches my gene expression profile  He showed me the PET scans and MRI scans and it appeared to me to be as bad as it was before I got the stem cell transplant. He's taking me off of the drug Viracept and putting me on an old drug cytoxan. He is doubling my dose of dexamethasone and continuing with Kyprolis. He was very compassionate and caring as well as his APN, Diane, that we think so much of. He suggested that I consider going off of treatment and starting palliative care. I told him I had never given up on anything and I didn't want to start with this. I will continue treatment. He went so far as to say that I should spend as much time with family this Christmas as I could.
I keep in mind that the doctor is not in charge of what's going on with me. I will continue to do what I can to help fight this disease and trust God to take me through it if He so chooses.
Thank you for your prayers. I sincerely appreciate them. A special thank you to Kathy, Joanie, Shirley, and Darlene for your caring and supporting comments.

We are still at the Myeloma Institute. We have seen the doctor but we have several things yet to complete before we can leave.

Just a short update. We're still at the myeloma Institute and we have not yet seen the doctor. We have seen the APN and she has explained some things from the testing. I will explain that later.

Today was a long and hard day. We arrived at the myeloma Institute at 7 a.m. and we were able to leave at 6:50 p.m. tonight. My hemoglobin has not been running low recently at home but it has dropped quite a bit with these tests I had yesterday and today. They told me I would have to have a unit of blood and that was where the problems for the day came in. We completed the scheduled treatment just fine and left to go to another appointment for an echocardiogram. When we returned from that appointment I thought everything would be ready to go with the unit of blood but I was wrong. I had another appointment scheduled to start at 2:15 for the PET and they are not flexible on when a person arrives. If you're not there on time, they take you off the list. I realized while I was getting the unit of blood, which took about an hour and 20 minutes, I was not going to be able to make it to my appointment at 2:15. I called them and told them of my dilemma and they said to come whenever I finished getting the unit of blood. When I got there someone else had been assigned to my slot of time and I was scheduled for 45 minutes later. That movement in the schedule caused me to run into another conflict with my scheduled MRI. They took me off the main MRI schedule and put me on a another schedule where they would work me in as time was available. This was due to my not arriving at my scheduled appointment time. This MRI was 45 minutes whereas the MRI scan yesterday was only 30.
I'm sorry these posts are later than I'd like for them to be especially since most of you are in another time zone, but we just finished eating supper and getting things cleaned up.

Today was a long day at UAMS. We were there all day and got back to the apartment after 5 p.m. I got all the tests completed that were scheduled for today including the bone marrow procedure. Tomorrow will be another full day of testing including getting treatment while I'm here. I will also have treatment again on Wednesday morning. Thank you Kathy and Shirley for your nice comments and prayers. They are much appreciated.

November 5, 2017.. We enjoyed our Sunday with having no obligations and no where that we had to be. The next three days will be kind of hectic since we have appointments starting at 7 a.m. each day, Monday, Tuesday, and Wednesday. I am scheduled to see the doctor on Wednesday afternoon.

November 4, 2017.. We left home at 7:40 a.m. to go to the myeloma Institute at Little Rock. We stopped to spend some time with my brother in Memphis and also in Forrest City to get groceries and arrived about 9:15 Central Time in Little Rock. The traffic was light compared to most Saturdays we have driven down here. We were able to get an apartment from home away from home at Park Avenue Lofts.

We left Little Rock this morning at 8 a.m. and got home tonight about 10:10pm. We ran into a huge traffic delay. The traffic was backed up over seven and a half miles. We also had another delay when we stopped to eat supper.
I will have to return to Little Rock for my first appointment on November 6th.
Thank you all for caring enough to read this blog and following along with us but most of all thank you for your prayers.