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.

October 10, 2017..  Thank you all for the comments and prayers. They mean a lot to both of us.
I finally got to see the doctor today after waiting in the exam room for 2 hours. He reviewed the PET scan and what the reading radiologist had said. He told me there were two lesions showing on the PET. This does not prove this treatment is not working but is a concern. He wants me to come back in one month for full testing. As planned, he increased the dosage of one drug that helps make the Kyprolis work better from 4 pills a day to 8 pills a day which totals 5000 mgs. The good news was he was really pleased that my blood counts were as good as they were. My platelets were 173 and my hemoglobin was 10.1.  They did not have the myeloma marker results. I suspect that someone dropped the ball somewhere along the line and they had not been done.
The news was not as good as I had hoped and expected. The myeloma marker blood samples that I had sent in two weeks ago looked really good but the PET scan didn't reflect those good results.
We will make the drive home tomorrow because I have treatment in Kingsport Thursday and Friday.
Thank you Joanie, Shirley and Kathy for your nice and caring comments and also thank you for your prayers.

October 9, 2017..  I got the tests completed today. That will be all the testing that will be done on this trip and I see the doctor tomorrow too find out how the new treatment is going. My appointment is not until 3 p.m. tomorrow. We had hoped to leave after the doctor's appointment but we thought the appointment was for noon so we will have to spend another night here and then make the drive home on Wednesday. I am optimistic that tomorrow I will get a good report on this treatment.

October 8, 2017..  We had an easy day today. We went to Sam's Club and just took it easy the rest of the day. It felt good to not be in a rush. It was hot and humid in Little Rock today. It was about 90 degrees.
I get all the testing done tomorrow that I will get on this trip. I have a PET scan tomorrow so I will not be able to eat anything for 6 hours before the scan. It should be an easy test day.

October 7, 2017.. We left headed to Little Rock at 7 a.m. Our plans didn't go as we expected. We had planned to stay at Jackson for the night and then go on to Little Rock the next day. We learned at Jackson there was a big homecoming and all the hotels were filled. We proceeded on to the next town which was Brownsville and they were also filled. We don't make reservations just for the night because we always use discount coupons and they don't allow you to make reservations using them. We finally decided just to go on to Little Rock which we did. We were not able to get an apartment as we usually do because they were taken. We're staying at TownePlace Suites and we're okay with that. The truck traffic was unusually bad this time. I think Saturday is a bad time to drive. It is coming down here anyway. I hope you are having a good weekend.
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Sent from my Android device with K-9 Mail. Please excuse my brevity.

September 16, 2017.. We made it home just fine. We enjoyed not having to hurry to get home. I think we're going to really like splitting these trips up into two day trips instead of trying to make the trip in one day. We didn't get home until later in the day because we stopped to do a few things along the way. Thank you all for following this blog and especially thank you for your prayers.

I am sorry again for the delay but I had finished writing this blog entry and then got a phone call and I forgot about it. I'm sorry I'm late posting again.

September 15, 2017.. We left Little Rock at about 11 a.m. it always takes us a long time to get up and get everything shipshape and packed before we leave. It makes it so much easier when we don't have to rush and try to get home the same day. Tonight we are in Cookeville at Country Inn & Suites. We have never stayed at one of the hotels in this chain and it is very nice. It is good to be so much closer to home. Thanks for all your nice and sweet comments on this blog.

September 14, 2017..  I got the Kyprolis treatment today in the infusion area. I thought we would not be there longer than 2.5 hours but we were there for 7 hours. The nurse said I needed to get another blood test and that showed my hemoglobin was low which would require a unit of blood, which I got. I found it hard to believe my hemoglobin had dropped from 8.7 to 7.4 since Monday with my myeloma not that active. She admitted that she might not have flushed out the port enough when she took the sample.
Tomorrow, we leave for home (yipee). We plan to drive to Cookeville and spend the night.
Take care and enjoy life!


Note: I typed this note and forgot to publish it. I am so sorry but I am finding it just now where I left it. It was finished but not published. I am sorry if you were looking for it earlier.

September 13, 2017..  As Charles Stanley often says "NOW WATCH THIS". Today, doctor Van Rhee told me according to my situation, the test results "CAN'T GET ANY BETTER THAN THIS". I could tell he was really pleased with what the tests were showing and so were we. One of the markers they look at is the percent plasma cells in the bone marrow biopsy. Mine were about 80% (the highest they had ever been) when we got here in early June. The test this week showed .0001%. On his report, he said if it had been any lower, it would have been undetectable. (Lower is good.) The imaging showed the lesions were gone! See what your prayers have done? Thank you and God for doing that. These are the best numbers I have had since I was diagnosed in early 2012.
I have started on the new treatment today and will get another treatment tomorrow. I will have the same treatment schedule I had before last December which is get two treatments per week for 3 weeks then get 13 days off. I will have to return here in one month for a few tests and review how things are going. I won't have to get the full round of tests I normally get.
Thank you wonderful friends and family for your support and prayers.

September 12, 2017..  I went through all the tests that I was scheduled for today . The bone marrow procurement went well. I finished with the MRIs tonight and did not get back to the apartment until 9:30 pm. I really don't like to have late appointments like that.
Tomorrow, I have the appointment with doctor Van Rhee. If he continues with the plan he had for me when I saw him last, I will get the first of my treatments tomorrow afternoon and I will get the second one on Thursday. We plan to start home on Friday. I hope our plans don't change.
Thank you all for following this blog and thanks very much for the  nice comments.

September 11, 2017.. Testing went ak today. I had the physical exam, blood draw, pulmonary function test, echo-cardiogram, and PET scan. I will not hear the results from the tests until I see the doctor on Wednesday.
Tomorrow, I will have the bone marrow biopsy starting at 12 noon and then 4 MRIs with the last one scheduled at 8:15 p.m. I hope they can get that one done earlier.
Thankful Irma was not as bad as they had forecast.

To Little Rock on September 10, 2017

We split the trip into two days. We drove to Jackson, TN yesterday and got there in time to go to the Casey Jones railroad museum. It was a pleasant day,. We were really surprised this morning to learn there were several families there that were Florida evacuees fleeing hurricane Irma. There were three families eating at the same time we ate and were talking with each other about their trip north away from the storm. One said she did not get to the hotel until 2am this morning. We had noticed there were more cars on the road with Florida tags than any other state other than the state we were in. I just did not understand why people were in Jackson that were evacuating Florida but I did not ask anyone.
My first appointment is tomorrow at 9am.

We made it home just fine at about 4:30 p.m. The traffic was heavier than it is during the week and we ran into a traffic backup due to a wreck that delayed us for probably 45 minutes or so. When we got home we were surprised to find a welcome home greeting waiting for us. After a little investigation we decided it was our dear friends Steve and Kathy that had come and left it for us.
Again, let me thank you all so much for your support in so many ways. It would have been so much harder if you had not been there.
I will resume this blog when we go back to UAMS the week of September 11th.

We were not able to leave Little Rock until about 1 p.m. today. We made it to Lebanon Tennessee and we are both ready for a good night's rest. I wasn't sure when I left Little Rock that I would be able to drive that far given how I have felt the last few days but I made it just fine.
I want to thank each person that has followed this blog and especially the ones that have left comments or emails of support. We will have to return in three weeks and at that time I will resume this blog. Thank you all so much for following with us.

My white count went up to 7.21 today, my hemoglobin went up to 9.1 and my platelets went up to a whopping 90. When I saw dr. Van Rhee today he was surprised and pleased with these results. They have exceeded what he had forecast. I feel very blessed that things have gone as well as they have with the stem cell transplant.
We are now released to come home and we plan on starting out tomorrow. We do plan on making the drive in 2 days instead of 1.
Even though my hemoglobin was in good shape as far as lab results they wanted to give me another unit of blood just to make sure that everything was in good shape in that regard especially since I was going to be on the road for two days. We did not arrive back at the apartment until about 6 p.m. because I had to get the CVL removed and the unit of blood.
I am scheduled to come back in about 3 weeks. At that time they will do testing as they did when we first got here back in early June and then they will determine the best treatment for me. They discussed several options with me today. One of them would be to go on a treatment that I have already been on before which is Kyprolis along with a drug that I have not been on before. They assured me that it will only be for testing to determine a new treatment plan and then we can return home.
Please remember that the main objective of this whole process has been to get my myeloma down to where it can be kept down with treatment. I am fearful since it is gotten down to a good level now that it may take off growing again in an aggressive way. Please remember to include in your prayers that will not happen.
I don't think it has been by coincidence that I have recovered remarkably well according to the doctor. My stem cells performed much better than they had predicted. Even the well-known Dr Barlogie thought my stem cells would not be good stem cells and even unreliable to use. I truly believe that all the good news I've shared with you in this blog has been because of your prayers and God's help. Thank you.

My platelets were up to 68 today but my white count came down to 5.91 and my hemoglobin was down to 8.5. I don't know any additional information about being released tomorrow. I will be released unless something unforeseen shows up. I may have to get another unit of blood in the morning if my hemoglobin drops below 8.5. I will also have to get the CVL line removed. I will do all of that before my doctor's appointment at noon.
In the past week or so I've lost 24 pounds. That was from fluid I gained while being on the steroids. I have very little appetite now but I don't think that is contributing to the weight loss.
The only virus that showed up where the current status is not known is the CMV. The nurse retested that today. The Provo virus is not active now. Something continues to make me feel yucky. I hope that feeling goes away soon especially before we start the drive home. I do plan to break the drive up into 2 days. We normally do it in one day.

Today was a big day for news. First let me say that my white count was 6.82 which was lower than it was two days ago and it was lower yesterday than the day before. My hemoglobin is 8.8 but my platelet level was 59. I don't know why my white count has dropped. The doctor had predicted that my platelets would max out at 50 or 60. It looks like that it's going to be much higher than that unless it stops going.
The news I got just a few minutes ago was that I will be discharged on Thursday this week. We will probably head home on Friday spending the night somewhere in route. I don't think, at this point, I could make that drive in one day. We will have to return for testing in about three weeks after we leave here. It will be good to be back to good old home again.

My white count today was 7.90 and my platelet count was 47.
They are still trying to determine about the level of the viruses that did show up in blood tests. They did a couple of specimen draws today to get more information.
I don't know why but as the day progressed I got to feeling pretty bad as I do now. I really look forward to the time when I'm feeling good most of the time.

Wow! We were surprised at my lab results today. They were even better than what we had forecast in our optimistic minds. My white count was 8.33, my hemoglobin was 9.4, my platelet level jumped up to 40 (it was 27 yesterday). We are very thankful to see this much progress this fast.
Tomorrow I have a breathing treatment at 9 a.m. The treatment is to help prevent pneumonia. Then at 1 p.m., I have the lab tests and review just like today.
Thank you all for all your support in so many ways. It is helping us so much to get through this.

We were only at UAMS about two hours today. After I got my blood drawn and tested, they determined that I didn't need anything extra. That was really good news for us and we enjoyed our time off.
My white count today jumped up to 6.83. The platelet count had gone to 27 and the hemoglobin was 9.2 which was lower than it was yesterday by .3.
I don't normally feel as good as usual and I have some other issues but I am slowly on the mend.
Let me say something about what I posted last night about the Parvovirus. It is common in children and they told me that I might have had it since childhood but never been active because my immunity has never been that low. It is not related to the parvo that dogs have. In children it is often called Fifth disease.

Today ended up being a big day for us. My white count rose to 5.05. My platelets were 20 and my hemoglobin, which is been running low, ran 9.5. It looks as if God is allowing the new stem cells to rebuild the bone marrow successfully.
In the blood cultures they ran, they determined that I have an active Parvo virus. They said I could have had it for a long time but since my immunity has been so low, it became active. I got another treatment of the IVIG to help with it. That infusion took about 4 hours and I might have to get additional ones during the next week.
The APN was so pleased with how things were going, she took me off the schedule of getting two antibiotics infusions each day and changed my schedule to only having to be there once a day. We have been going at 9 a.m. and the other appointment was at 5 p.m. so now we have one appointment which is scheduled for 1 p.m. We were really pleased about that.
It seems that recovery is progressing much faster than I expected. Based on what I interpreted that doctor Van Rhee said, this is much faster than what he would have predicted also. Thank you all so much for your prayers for the best outcome for me.

I meant to post yesterday that they did several cultures to try to find why I am still running a fever. When I take Tylenol, the fever does not show up, but as soon as I stop taking it, the fever reappears.
We spent less time today at UAMS than we have in quite a while. We were there between 4 and 5 hours and it was really good to have that extra time away from there.
My white count today was 3.33 and my platelet count was 13. The platelet count was 14 yesterday so that means the bone marrow is producing even though it's got a long way to go to be at full production. When I got the melphalan chemo, it killed out my bone marrow. The stem cells are used to go in and rebuild my bone marrow. The doctors expected that my stem cells are not in real good shape and would be very slow in rebuilding the bone marrow. I have been very pleased so far at how quickly it appears the bone marrow is being rebuilt. I am very thankful that is the case.

My white count today jumped to 2.76. My platelet count was 14 and that has been without adding additional platelets for 2 days now. I did not get a growth factor shot today since my white count had exceeded 2.0 so I expect that my platelets will now start to recover.
Today I talked with a fellow in the waiting room, before I went in for my infusion, and his wife has myeloma and they are from Newport News, Virginia. I was surprised to find out that he grew up in Kingsport and knew a lot about the area.
We both would like to say a big thank you to Crossroads Methodist Church in Kingsport for sending the nice care package they had put together. It is much appreciated and will be used.

I started the day by running a slight fever and feeling fine, but as the day progressed I felt much worse and the temperature went over 102. I have not mentioned it in previous posts but I have been having a problem with having low blood pressure. When I went back for the 5 o'clock appointment today they got very concerned because of my low blood pressure. They were going to send me for an EKG but that section was closed for the day. They thought they were going to have to send me to the emergency room but after I had ice bags under my arms for about an hour, my temperature came down and my blood pressure got in better shape.
My white blood cell count today jumped to 1.64. My platelets did not drop as much as they usually do so I'm hoping that this is an indication that my bone marrow is now producing platelets.
As I write this, my temperature is normal and that is the first time in several days that it has been normal.

Today was another day that I did not feel well. We were at UAMS from 9 a.m. until 7 p.m. and during most of that time I was running a fever and late in the afternoon it went up to 102. The doctor thought the fever could be from the stem cells ingrafting. They were wanting to put me in the hospital but I talked them out of doing that.
I received one bag of platelets today and a unit of blood. My white count today was 0.71.

I felt better today for most of the day. We were at UAMS from 9 a.m. until about 4:30 today. I received the IVIG treatment with no problems and that took between 4 and 5 hours. My white count yesterday was 0.21 and rose today to 0.43. I expect it to be making some large gains in the next day or so. The nurse said the growth factor shot that I get each day is causing the stem cells to produce white blood cells instead of producing platelets. That will continue as long as I am on the growth factor shots which should stop when I've had two days higher than 2.0 on my white count. I look forward to when my platelets start to increase on their own. After I got the second bag of platelets last night, my count was 22 and today when they were checked, when I first got there, my platelet count was 11. I received another infusion of platelets today and the count went to 29.
Let me explain why I went on this new and stronger antibiotic that I have to get two infusions each day. I was running a slight fever at times and they didn't want to take any chances on me picking up something else so they started me on this more powerful antibiotic. It was done more as a preventative than it was a solution to an existing problem. As far as I know, I will only be on this antibiotic for six more days/twice a day.
Thank you all for your wonderful and caring support. It is much appreciated.

Today has been a trying day. We arrived at infusion 4 at UAMS at 9 a.m. and we're still here tonight not having left today and it is now 7:25. There is some possibility that I will have to spend the night in the hospital because of a platelet transfusion I got earlier. It did not raise my platelets and my platelets are at a critical level. I have just received another bag of platelets and waiting now for the lab results. People here in the infusion area had to stay over since the infusion area closes at 7 p.m. If this new bag of platelets does not bring my level over 10, I will have to stay in the hospital tonight so they can give me more platelets.
My white count did rise a little today and is 0.21. I think that means that it is on a steady increase now.
I will try to post another note later to let you know if I did have to stay in the hospital tonight.
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This posting did not go out when I intended. For some reason, when I am at UAMS my email does not go out and I have to send it another way. I am updating this now at 9:33pm and the good news is my platelet count went to 22 after the last infusion of platelets. That means we did not have to spend the night in the hospital and all is okay. I am feeling better tonight than I have the past several days. I hope this continues.
I received two bags of platelets and one unit of blood today.
I will have a similar schedule tomorrow at UAMS. I have to be there at 9 and then again at 5 but they tell me that I will have to have something called IVIG and that takes quite a few hours in addition to the other things I will have to get. The IVIG is an immunity building infusion. I don't know much more about it than that. It may end up being another all-day event.

I had another bad feeling day today. My white count did rise to 0.17. My platelets was 6 before the infusion of platelets. I got one bag of platelets today and one unit of blood. I don't know if the small rise in my white count means that it is turning around or not. I will know in the next day or so. The worst part of these bad feeling days are the issues I have with my digestive tract.
The APN put me on a different antibiotic today. It will require me getting two treatments each day. That means we will be going to UAMS in the morning at 9 a.m. and in the afternoon at 5 pm. This should continue for about eight days.

Today was another day of not feeling well. The nurse assured me that I was right on target for how I should be feeling now. The APN threatened me if I did not start eating that she would have me admitted to the hospital and fed through a tube. I think that has convinced me.
My white count today was 0.08. My platelet count was 12. I received a unit of blood today. My blood counts will not recover until the stem cells have found a place to live in my bone marrow and are producing as bone marrow. No one knows when this will be.

Today has not been a day that I felt good. I have run a slight fever today and generally not felt well at all. My white count was 0.10 and my platelets were 7. I did receive a bag of platelets. I got the high powered chemo, melphalan, one week ago today.

I continue to feel better today than I did two days ago. The nurses tell me that I will get to feeling worse so I will see how that goes but for now I feel good. My white count came up a bit today but they said it was because I started on the growth factor shot yesterday and it will come down to where I have almost no white count at all. I will continue on the growth factor shots until my levels are back to normal. My white count was 1.46 today my platelet level was 13. I will have to get platelets tomorrow and possibly another unit of blood. They are trying to keep my hemoglobin level above 8.5.
Getting my blood samples drawn here at the apartment worked out really well. When we got to UAMS they already had the samples tested and I received the results. I really liked that.
I hate to complain but can't they find some nurses another job to do other than nursing? A male nurse was changing the bandage on my neck, which covers the CVL line entry into my neck. He was taking the bandage off and pulled a big hunk of skin off of my neck and it did not feel good and still does not. He was simply going too fast and too rough to make it come off correctly. Pulling hair out with tape does not feel good but that is no comparison to pulling your skin off with tape.
I will stop complaining and let you go on enjoy your day or your evening. Thanks for following along with us and caring.

I got the last of my stem cells today and that took most of the day to get that completed. They tell me that I got a total of 4,700,000 stem cells in all. I will still have about 700,000 stem cells in storage. They tell me it will be 5 to 10 days before the stem cells start rebuilding the bone marrow which is been wiped out by the chemo I got last Wednesday. During the times that I was actually getting the stem cells there was the APN who was responsible for manual infusion of the stem cells, a doctor overseeing the operation, two nurses and a person from the area responsible for storing the stem cells in the liquid nitrogen.
I felt better today than I did last night and I was not running a fever today as I was last night.
They have a program for UAMS myeloma patients staying in these Park Avenue Lofts apartments. They come early and draw the blood before the appointment at UAMS. I have never taken advantage of that program but we will start doing that tomorrow so when we arrive at UAMS/MIRT they should have my blood results already completed and ready to review to see if I need anything. This should save lots of time.
Thank you to all our wonderful friends and family for your support.

Today's update will be brief. I'm not feeling as well as I have been in the past few days. I started running a fever about midday. I have started on an antibiotic now. My platelets ran 23 today and my white count was 1.46. I will get my last bags for the stem cell transplant tomorrow.
It was beautiful weather here today with low humidity and decent temperatures. From what I hear, just like at home. A few days ago the heat index was 110 in this area.

We were at MIRT today about three and a half hours getting blood work done and questions answered. It looks like I will have to get a unit of blood tomorrow since my hemoglobin today was 8.2.
My platelets were down from 34 yesterday to 26 today. My white blood count yesterday was 4.07. Today it's 2.57. It looks as if I'm heading into the time that I will have no immunity and I will have to be very careful.
I have not mentioned how my neck is doing after the surgery with the seven or eight inch incision starting at my skull and going down my back, but it continues to improve with less pain when I move my head up and down and back and forth. I had been concerned that it might retain that pain but it is improving.
Thank you all for all the prayers and support.

I went today and got 3 more bags of stem cells. I will not get any Saturday and Sunday then I will go back Monday and get 3 more bags and that will complete the stem cell transplant. I will have to be it the cancer center Saturday and Sunday but that'll just be for checkups and getting blood work done in any corrections that need to be made. I'm trying to eat foods with potassium in them because if I have to get a transfusion of potassium it takes 10 hours to get that. They can't run it faster than that because it causes heart failure. The process of getting the stem cells went very smoothly today but I was there from 9 a.m. until about 4 p.m. getting that done. I always have to wait afterwards until I complete a bag of saline and today that took about two and a half hours extra. It was causing my heart rate to drop and they had to run it slower.
My lab work showed that my platelets had decreased from 42 yesterday to 34 today I expect lots more decreases in the next few days. They also keep telling me that I will start feeling real bad soon. If I feel bad enough during those days, I probably will not do a blog entry but we'll see how it goes. Some people make it through without this sickness and so forth that they tell me I will have.
I'm so hoping and praying that this chemo treatment that I have received will kill out the myeloma. I know you're praying the same and it's very much appreciated. Thank you all for your support it is needed and appreciated so much.

In the photo above is one bag of my stem cells. I thought you might want to see what they look like. I don't think you can see it in the photo, but the stem cells look kind of grainy in appearance. It took us over three and a half months being down here in 2013 to get these 10 bags.
I failed to post last night what yesterday's platelet count was. It was 48 yesterday, and was 42 today. So that means it's probably started back down due to the chemo I have received. I will not receive any platelets now until it gets down to 10. That is unless I have unexpected bleeding.
I received my first stem cells back today. As you remember, they were collected in early 2013 and kept frozen in liquid nitrogen since then. There is a total of 10 bags of stem cells. I received four of them today. I will receive three of them tomorrow and the other three on Monday. The APN that is assigned to me while I'm getting the stem cells told me today that in the next 3 to 4 days I will start feeling really bad. That will continue until I have recovered. Some people have reactions when they get their stem cells back due to the preservatives that are used with the stem cells. I felt fine all during the time I was getting the stem cells back. It took a couple of hours, and then I had to wait two hours after I got them to make sure I wasn't getting some kind of a reaction. It was interesting, a lady from the place where the stem cells are stored brought one bag at a time and after it was infused, she would bring another bag.
My white count today was 3.74 but it will soon start to go down because of the chemo. They forecast it to get near zero. At that point I won't be able to be around any people except medical people at the infusion area where I go and Reta. They tell me this condition, since I am a slow recovery person, could last a couple of weeks or more.
Thank you all for the nice comments and other communications to us. They are very much appreciated. It lets us know you're going through this with us and that means a lot. Thank you!

I received the dose of melphalan today. I have had no side effects so far but they predicted that the side effects would start in the next few days. They told me the infusion of the chemo would take about 20 minutes so I had predicted to myself that we should be in and out fairly quickly today even though I knew I would have to get a unit of blood. It ended up that I had to get two units of blood and a bag of magnesium. We got there at 8:45 this morning and did not leave until 5 p.m.
It was Reta's birthday today so after we finished, I took her out to eat somewhere that she wanted to go.
Please don't forget to include in your prayers that the chemo I received today will wipe out the myeloma without causing life-threatening side effects. Thank you for your prayers and your comments on the blog.

I saw doctor Van Rhee today and I will explain as best I can what he explained to me. He had the images for the PET scan that was done yesterday. He explained that even though the myeloma markers had gotten better the images when compared to the June 7th images were worse now. I could easily see for myself the images were worse now than they were when we came in early June. Since I have gotten the vdt pace, it should have improved the situation greatly but it had not. The scan showed hot spots all over my body. There are doubts now the high powered melphalan will reduce the myeloma as it should. He said to keep a positive attitude and hope for the best. I will continue on with the stem cell transplant as I had planned before. As I write this we're waiting to get the central line installed so that they can give me infusions of my stem cells. We have waited here for over 3 hours and still have not gotten anything accomplished. I thought I would use this time waiting to catch up on the blog.
My platelet count had gained to 30 today from 29 yesterday. I have mentioned in the blog about my Kappa free light chains going down to about 7 after I got the vdt pace. They have steadily increased to 10 and then 20 and today they were 44. These big increases have been in a short amount of time. This is really not good.
As you can see I really need your prayers in order to stop this awful disease. Thank you.

My platelet count had gone to 29 today from 28 yesterday.
My schedule called for me to get 4 MRIs today with the last one starting at 9:30 tonight. When I went in at 8 a.m to get one of the MRIs this morning, the lady told me that she was going to try to do all four while I was there this morning. She managed to do that and I was so glad that we didn't have to go back tonight. I got the 4 MRIs , blood work and the PET/CT scan this afternoon.
Tomorrow I will have to see Doctor Van Rhee and I will also have to get a CVL line put in. That's also called a central line. The last one of those I got put in, they put it in my neck and I really didn't like getting it put in. Maybe tomorrow will be a more pleasant experience getting it put in.
Just a reminder that Wednesday is when I will be getting the melphalan infusion. They told me today that it would be about 10 days after they are given to me before the stem cells start to make any difference.
Don't get overheated in the hot weather.

We had to go get my blood work done today and my platelet count had gone up from 23 two days ago to 28 today. Of course we were so glad that it was going up.
I have found out that the chemo infusion will last about 30 minutes. I have been told that I won't feel any effects for a few days and then they will be pretty bad. I will have to say I really dread going through this, especially with the risk involved in recovery that I mentioned in an earlier posting.
Tomorrow, my testing starts at 8 a.m.and then we have some big breaks between tests with the last one starting at 9:30 p.m.
I hope everyone has a wonderful Monday.

We didn't have to go to UAMS today so we spent the day relaxing and getting caught up on doing nothing except what we wanted to do. We did watch several episodes of Gunsmoke that was filmed in 1957. We both really enjoy watching Gunsmoke.
The only thing we have tomorrow is to go for Labs at 1 pm. I will be hoping that my platelet counts have gone up from the test yesterday.
I hope everyone's having a really good weekend and staying out of the heat.

The only thing we had to do today as for anything medical was to go and get my blood drawn and tested. After it was drawn and after there was enough time for it to be tested the nurse came back and told me that the platelet count was 13. We were very disappointed and I was also concerned because two days ago it had been 21. I was trying to think what's going to happen now with such a big drop in just two days and how that's going to affect things. How can I possibly recover from a much stronger chemo when I'm not recovering from the past one which is been almost a month ago. The nurse came back into the room and said she had looked at the results wrong instead of being 13 my count was 23. Well we were overjoyed and so relieved. The count did not go up much but it did go up and not go down. This shows I am recovering!
The APN that we saw today is giving us another day off tomorrow so we don't have to go back until Sunday. The extra day off will sure feel good.
Thank you all for the comments. Joanie, my address here is:
Jerry Caldwell
Park Avenue Lofts
Apartment 3113
320 South University Ave
Little Rock, AR
72205

We did not have to go to UAMS today so we took the opportunity to get stocked up on supplies that we will need while we're living in the apartment. It was really hot here today but I won't complain because I know it was really hot there in Northeast Tennessee too. They are forecasting it to get to 97 here tomorrow.
I got my schedule for testing next week and it looks like I'm going to have a very heavy schedule on Monday. My first one starts at 8 in the morning and my last one starts at 9:30 that night.
I won't have any counts to report today so I will report them tomorrow night after I get the tests done. I hope everyone has a nice evening. Thank you all for the real nice comments you left. They are much appreciated.

Today was kind of an uneventful day which feels so good at this time the way things have been the last few weeks. Map platelet count yesterday was twenty-three and today's check was 21. I hope that means they're kind of holding their own and maybe they will soon start to go up. I don't have to go back to MIRT tomorrow. I get to take that day off but then we will have to go back Saturday and Sunday. Let me explain again what MIRT stands for in case you missed an explanation I made several blogs ago. It stands for Myeloma Institute for Research and Therapy which is part of UAMS. UAMS is University of Arkansas for Medical Sciences.
I had to get an IV of magnesium today which increased my stay there for another 2 hours.
Thank you all for the really nice and wonderful comments you made. They are very uplifting. Reta appreciates them too.

You can see in the photos above the difference in our sleeping facilities in the hospital and our sleeping facilities here. I am very thankful for the hospital but I am so glad to get out after 38 days being in there.
I learned quite a bit about the future plans from Dr. Van Rhee today. He told me that my bone marrow biopsy I had in early June showed 80% myeloma involvement in my bone marrow. The one I had last week showed only 5% involvement. The four days of chemo made that much difference but it is short lived because the myeloma will come back as strong as it was before if further treatment does not proceed.
One week from tomorrow, on Wednesday next week, he plans to start a stem cell transplant. I will receive a 45-minute infusion of melphalan and 18 hours after that, I will start to receive my own stem cells back in order to rebuild my bone marrow that the melphalan has wiped out. I will receive the five million stem cells, that I have stored from 2013, over a period of several days. There is risk involved since I have a low number of stem cells stored and he said the quality of the ones stored are probably low quality. He predicts a very slow recovery time as for as me producing platelets and also I will never be able to produce platelets like I once could. That will restrict what treatments they can use to control the myeloma since most treatments cause lower platelet production. He said I would have very low white cell count for about 2 weeks after the melphalan infusion and I would have to be very careful not to contact infection. He thinks the recovery will take around eight weeks. It looks like we're going to be here for a while. As I find out more, I will post more information on the blog about it.
I really appreciate all your notes, comments and emails. You all make this whole thing a lot easier.

My white count had increased to 3.32 this morning. I won't post results of the white count again unless there's a big change in them. My platelets changed from 16 yesterday to 15 today so I'm hoping that means that I am holding my own on platelets. Maybe they will soon start to go up on their own but I did receive a bag of platelets today and one unit of blood.
It seemed as if we were never going to get out of the hospital today and be released. They had to remove the PICC line late this afternoon that was not as easy as I had hoped. The device has something to hold it in that resembles a hook on each side of it. When they started to remove it, the hooks would not release from the flesh inside my arm. The nurse worked on it awhile and each time he pulled, it created quite a bit of pain. He gave up and called another nurse and she had the same problem and finally she gave up and called a doctor. He came and pulled and tugged and each time the pull and tug caused even more pain so he gave up and called a surgeon. The surgeon gave me several injections of Lidocaine around the site of the PICC line and pulled it out and that finally worked. Thank goodness!
We finally got to the apartment and it is lovely, and quiet and just wonderful to be here. I have to go back to MIRT in the morning at 9 and then I have an appointment with Dr. Van Rhee.
I'm sorry I'm so late posting this but we have been running so behind this afternoon.

My white count increased today from 3.06 (yesterday ) to 3.32. I probably will not get a growth factor shot tonight to stimulate production of white blood cells. I have been getting the growth factor shots to increase my white count. My platelet count was down again today to 16. They have been trying to keep it above 20. If it is not higher tomorrow, I will be getting another bag and possibly two bags of platelets. I'll be closely watching my platelet count in the next several days and hoping the count is going to go up.
We met a nice Mennonite family here today who have a daughter here that has leukemia. They live about 170 miles from here and there must have been about 30 of them, including kids, here to visit the one in the hospital. It really reminded me of being around the Amish when we go there. We enjoyed talking with them.
I hope you have a good start to a new week.

This is our 36th day in the hospital.
My white count went from 2.32 yesterday to 3.06 today. I will get my last growth factor shot tonight so the white count is forecast to drop some after these injections stop before it continues to go up. It actually could be at a maximum at this point, I guess. I did not get platelets today. They will see if I can hold my own on my platelet count or if they will go down again. Of course I am hoping that it will hold or go up in the count.
This was my first day to get out among other people without a mask on. We even walked downstairs and went out to the parking garage to take a couple of items. I still expect that we will be released to go to the apartment on Monday.
Thanks very much for both of your comments on yesterday's posting. They are much appreciated.

My white count went from 1.76 yesterday to 2.32 today. I will soon stop taking the growth factor shots so the white count will drop but I don't know how much. I got a large bag of platelets this morning.
I got the sedated bone marrow biopsy today without any problems. One of the nurses there is from England and we got to know her from back in 2013 when she worked in the infusion area. It was good to see her again. She was always real good to me and still is.
Thank you all for your comments and support. I sure appreciate it. Joanie, to answer your questions... just include us in your prayers and that all goes well with the stem cell transplant and it's successful afterwards... donor stem cells are sometimes used from siblings, but there are often serious problems when doing that. The most successful is when a person uses their own stem cells for the transplant.
The doctor told us today we would be leaving the hospital Monday or possibly Tuesday. We have been able to get an apartment from the church ministry "Home Away from Home" as we have often in the past. I will still have to continue to come to UAMS for platelets and other reasons.
I hope everyone has a wonderful weekend.

Today was a very busy and sometimes hectic day. During breakfast, we had two doctors and two APNs in the room at one time. One of the doctors was Van Rhee. He told us he plans on doing a stem cell transplant in about 2 weeks. He has some concerns about it which gives me concerns also. The main thing that he is concerned about is developing into MDS. MDS is deadly. Since I had a poor stem cell harvest, it would tend to create a situation where MDS could happen. He does not think the chance of that happening would be greater than 10%. He said at this point we don't have a lot of options. He thinks there'll be about a 4-week recovery after the transplant. He said my numbers would be very slow in coming back up due to the way my bone marrow recovers. In preparation for the stem cell transplant I will have to have a whole new round of testing similar to what I have when I come to Little Rock each time. Today I went for an echocardiogram and a pulmonary test just to see if I can make it through the stem cell transplant okay. Tomorrow I go for a bone marrow biopsy. The remainder of the tests will be done next week. Thank you all for your prayers. I appreciate them more than I can say. I hope you will continue to pray as we both will need them.
The last few days I've noticed the temperature going up at home inside the house. It has continued to go up even though the heat pump indicates it is running. I called Custom heat and air conditioning today and had them come out and check it and they found the compressor has gone bad. I don't know why things like that happen when you're away from home but it seems like that's the way it happens. At this point, I plan on getting them to repair it even though we are not home.
My white count went from 1.25 to 1.76 today. I will go off the growth factor shots soon and when I do, the doctor said they will drop again but that is normal.
Joy, thank you for the nice comment. I agree with you growing up back then has a lot of good memories.
I hope everyone has good days ahead.

I got 2 bags of platelets today.

My white blood cell count increased today from 1.09 yesterday to 1.25 today. My hemoglobin and red cell count is also increasing.
I don't have anything new to report today. I didn't see a doctor other than the hospital doctor but tomorrow I should be seeing doctor Van Rhee.
That is all I have to report today. It's been a pretty calm day. I hope you are enjoying whatever you're doing and looking forward to tomorrow.

My white count went from .79 yesterday to 1.09 today. My platelet count yesterday, after I got the bag of platelets, was 30 and this morning it was 22. I hope that means they're holding somewhat on their own. I think in the last several days they would have dropped more. For example yesterday, before I got the bag of platelets, the count was 12. I might be just too hopeful at this point. They assure me that it will soon be going up if not now.
Dr. Van Rhee's two APNs came by and filled me in more on their thinking as to what Van Rhee might decide. They are thinking I will be discharged by this weekend. We would then be here for about 2 weeks and then possibly have a stem cell transplant. I have no idea how long that would take but recovery would be the longest part of the process. I know the stem cell transplant would be risky, but at this point I think that would be the way to go if the doctor recommends it. They were very pleased with the way my body had responded to the chemo and recovered well so far. I have been very blessed to not have had very many side effects. I've heard stories of people really having a rough time.
This is a good time for me to say again how much I appreciate your prayers. I think each of you for your support. It has really meant a lot to us both.
I told the APNs that I felt better now than I had felt in a long time. They said myeloma produces something in your body that flu produces when you have the flu. With my myeloma reduced right now, I am feeling better.
Thank each of you for your comments.

I received another bag of platelets today and one unit of blood. My body, of course, is still not producing enough platelets to keep up.
My white count went from 0.56 yesterday to 0.79 today. Of course, I was very glad to see that increase. The best news I got today was from my myeloma markers test which are done on Mondays and Wednesdays. The Kappa free light chains went from 8.60 last Wednesday to 7.07 today. They should not exceed 1.94. I had feared that they would actually go up and the doctor on the weekend prepared me to see a result where they did increase but I am very thankful that it actually went down. Of course this past chemo was just to get the myeloma knocked down to where it can be managed in some way and will come back as bad as it was if nothing else is done. The weekend doctor told me that I may need to have a bone marrow biopsy just to check to see if the myeloma has actually decreased or has only decreased the markers.
I am very thankful for all the prayers that have gone out asking God for my healing.

Today was the 31st day in the hospital.

We had a wonderful visit today with my brother from Memphis and my niece. They are in the photo above. I really hated to see them leave.
My white count went from .34 yesterday to .54 today. I had to get another bag of platelets today so I am still not producing platelets which is expected right now.
Thank you for your nice comments. I hope you have a nice beginning to a new week.

I received one bag of platelets today and one unit of blood. My white count went from .24 yesterday to .34 today.
I am so hopeful that my platelets will soon start to recover. In case I didn't mention it in a previous post, that is an indication of how well the bone marrow is recovering from the chemo. It must recover before I can go on to the next step. At this point, it looks like the next step would be a stem cell transplant.
My hair was coming out from the after effects of the chemo so we cut it all off last night.
Thanks for leaving the nice comments.

The photo above shows the work that Dr. Pait did on my neck. They tell me it will not set off metal detectors and it'll be okay to have an MRI with it.
My white count went from .12 yesterday to .24 today. It looks like it's on the increase now and I hope the platelets will increase too but they tell me that's the last thing to recover. The doctor said today it will probably take a week or two for the platelets to recover. I meant to post yesterday that I got a bag of platelets yesterday and a unit of blood the day before.
A big happy birthday to our good friend, Kathy Dean, who regularly reads this blog and often leaves comments.
I guess that will be all for today. I hope you're having a real nice day.

My white count went from .06 yesterday to .12 today. Maybe now it will continue to increase.
The oncologist that is seeing Dr. Van Rhee's patients stopped by today and was very pleased at how my myeloma markers have come down. He said this past treatment of chemo will probably work another two months. I hope he is right.
I continue to have digestive tract issues from the chemo. I have no idea how long that's going to last. Today I saw my first sign that my hair is starting to come out. I will probably cut it all off tomorrow. I have not felt as well today as I have the past several days. It could be because of sleep they came in at 3:45 this morning to draw the blood. They have not been doing it that early before.
I hope everyone is having a nice day.

This is the 26th day in the hospital.

I thought I would do this blog post earlier today even though there might be something happening between now and bedtime since I had good news to pass on.
Both of Dr. Van Rhee's APNs came in this afternoon and brought the latest results of my myeloma markers. They were very pleased that my Kappa free light chains had improved greatly. Of course I was too. I had been very concerned. The test on Monday was over 16 and today it was only over 8, normal is about 2. In the photo of the plot they brought me, you can see how high the Kappa free light chains got before I got this latest chemo. This chart goes back to August of 2013. I had feared that this chemo, which I've had two times before, would not bring the counts down and I am so very thankful that it has worked. In April of 2013 and in November 2013 I got it which was part of the stem cell collection process.
The information that I had received about when Dr. Van Rhee is going to return has been incorrect. The hospitalist told me he was going to return on Wednesday but it is not this Wednesday but a week from now. The APNs predicted that I would be in the hospital for another week or two. I won't get to leave until I'm making platelets again. I received one bag of platelets today and one unit of blood.
I expected my white count to take a big jump up today but it didn't it actually went back down to 0.06. The APN said it was normal for it to vary this much before it starts up. She also said it wasn't as important for the white count to go up as it was the platelets. They can do more to control the white count by giving me the growth factor shots.
Thank you for the comments. They are much appreciated. I hope you have a nice evening.

Thank you all for your comments. It's always good to hear from you and a bright spot in our day.
I still have some lasting effects from the chemo. That was expected though. My counts went up today. They went from .07 yesterday to .11 today. The doctor said this morning that she expects large gains in the next couple of days. I'm not sure when or even if I will lose my hair this time. My plan is to cut it off before the main part of it comes out but I fear that if I cut it off partly, I would then have a poor haircut. Then, if I did not lose it I would be in a mess. I guess it will all work out. I expect to see my oncologist on Thursday.
I hope you had a nice holiday.

I'm still having some after effects of the chemo. I think that will go away in the next few days. My white count did go up a small amount today but I was very glad to see it because it did go up instead of continuing to go down. It went from 0.05 yesterday to 0.07 today. The best news I had today was that the Kappa free light chains went down considerably from the test this morning. The Kappa free light chains is one of the major things they look at when they look at the myeloma markers. On June 28th my Kappa free light chains was 58.91 and this morning it was 16.17. Normal would be not to exceed 1.94. On one check since I've been here when I was without any treatment at all it was 84+. You could see why I was so glad with the number that I got today. I was so concerned that this round of chemo that I just had would not work and I'm so thankful that it is. Thank each of you for your prayers. It really seems like we're all in this together. I am very thankful for each of you.
I hope you enjoy the holiday.

Thanks for the caring comments that were left on yesterday's post. I really appreciate hearing from you.

I made an error in posting my white count the last couple of days and got the decimal point in the wrong place. I have used the computer and made a correction and it is now correct. The reason I mentioned that is in looking at the results of the past two days it looks like my results would have gone up based on today's results which they did not. The white count continued to go down. Yesterday it was 0.20 and today it was 0.05 which would be 1/4 of what it was yesterday. Maybe soon it will start to recover.

The only chemo after effects I've had today have been digestive tract issues.

When we first got here I had a hospital Tech that was a young black man that seemed to be real caring and we hit it off real well. During that first day he asked us if we knew Jesus. He has come by to see us even though he might be working in another location. Today was his off day and he came in to visit. He's 23 years old and one of the reasons he wanted to come in today was to have prayer with us.
That is all for today thanks for reading.

We had family come from Memphis today to visit. It sure was great to see them. In the photo above is Kim, Val, and Joe. I really hated to see them leave.
The weekend hospitalist came by and had quite a bit of information to share since she had talked to doctor Van Rhee's APN and the APN had talked with doctor Van Rhee. My white count this morning was 0.20. That is less than half what it was yesterday. She said that she expects the white count not to bottom out for 2 more days and then start to increase. She also expects the myeloma markers to improve over the next week. I sure hope she's right. She said that Dr. Van Rhee has a plan at this point to give melphalan and then stem cells which amounts to a smaller than usual stem cell transplant. That is scary to me since it could result in a worse disease called MDS but we will see what the doctor thinks after this.
That is all I have to report today that I can think of right now. I hope you have a good Fourth of July holiday.

Today has been a pretty uneventful day. I'm not counting the many times that I was stuck and hooked up to an IV. By that I mean I got four shots at one sitting. I get my blood sugar checked three times a day. I don't have anything new to report that came from doctors.
My niece is coming tomorrow from Memphis to visit and that will be a real treat to see them.
My white count continued to drop from 0.89 yesterday to 0.42 today. I continue to get the growth factor shots so I hope they soon will be making the counts go up. Anytime I am outside the room I have to wear a mask. Overall, I have felt pretty good today but still not as good as I usually feel. I have had no nausea today either.
That pretty much sums it up for today. Hope everybody has a good weekend.

I have quite a few things to report today. I am sorry I'm a little bit late getting this posted. I have had lots of things going on such as getting IVs and nurses coming in.
My white count today was about what it was yesterday it was 0.89. I did get a neupogen shot last night and I don't know whether that brought it up any or not I will also get another one tonight.
Diane, the APN for dr. Van Rhee that we like so much, came by today. We were glad to find out that dr. Van Rhee will return next Wednesday. She thought I might be in the hospital for as long as two weeks more. She said that he would probably want me to go home and come back in about 3 weeks. She did mention the likelihood of a smaller stem cell transplant. We both felt better after talking with her knowing that we do have options as far as treatment even though they may be not conventional and somewhat hard to do. One of the treatments mentioned that they have had success with on difficult patients was using an HIV drug along with the treatment kyprolis that I was on for two and a half years.
I was not nauseated today but I just didn't feel good all day. I know that is because of the chemo and I just have to get through it to get back to feeling better.

The nurse changes out the chemo bags while I was on the four days of chemo. Notice that she has on a protective face shield mask and then the cover wear. It is hard to imagine that I'm getting this pumped in to my body during this time. One of the parts of the chemo is called the Red Devil or doxorubicin.
I meant to explain in the previous post that the PICC line not only goes into the vein but also goes up through the vein up to the heart. Kathy you are right it is good arm jewelry but I just as soon not have it really. I expect that as soon as I am ready to leave the hospital they will take it out.
I continue to go without any nausea today. I'm real thankful for that. I guess this will be my last posting for today.

In the previous posting I meant to say lV and not Ivy. After it's posted, I cannot change it using email so I would have to go to the computer and do an edit using the computer.
Here is a photo of cards that Reta has put up that we have received since we have gotten here. We very much appreciate the cards, they mean a lot.

Today has been uneventful and I've not had any nausea today and I am thankful. I have not felt really good but I'm not sick either just don't feel as good as usual. I thought I would try updating this blog using email and also posting some photos to give it a good test. I thought if I could post photos and make it somewhat more interesting to read.

My white count dropped today to 0.9. I will start taking growth factor shots are neupogen shots later today. That should cause my white cell count to start to recover.

Kathy and Darlene thanks for your comments. We will be looking forward to seeing you all when we get back.

Here is a photo of the PICC line they installed. I will have it until I get discharged from the hospital. They put it in so that they could administer the chemo using my port and use the PICC line for other things like blood and platelets and any other Ivy that I might need.

Just a quick update to say that I've had very little nausea tonight. I was able to get all of the potassium that I was getting pumped in and it just finished about 10 p.m. I sure hope tomorrow I'm not hooked of those pumps again that was five days I was on those pumps. I don't like it. It is so hard to go even to the bathroom. That is all for today.

June 27, 2013..  A doctor came by about 6 p.m. yesterday from the office that did my neck surgery and removed the staples from my surgery incision. The chemo bags ran out about 10:00pm last night. I thought I would be free and unhooked from the IV lines and pumps but they put me on a 10 hour infusion of potassium. I also received a bag of platelets. My white count had dropped to 1.74 when they drew the blood samples about 5am today. I am having some slight nausea at times but nothing bad so far. 
The doctor that makes rounds each day and has been very helpful in providing information asked me if I had a medical background. I told him no and he said I seemed to know a lot about multiple myeloma and treatment. I said I felt like the more I know, the better off I would be. I was pleased with his comment but I wish I knew nothing about multiple myeloma.

I tried to post last night using email and it did not work. I think I have it ok now so if there is a posting that has a smaller font and looks different, it will be due to sending the post via email. Doing this will help me since I don't have to get the computer out and set it up. I have the posting time set to central time. It has not been set for that time zone in the past. 

June 26, 2017.. I am updating the blog early in the day and will probably need to update it later today. So far, I am doing all the updates using the computer. If I use email to update it, that would be much easier but not sure how well it would work. 
So far, I have had no ill effects of the chemo. My white count went from 6.54 yesterday to 4.03 today. It looks like the chemo has started to bring down my counts. 
I checked back on my backup photos and found photos of the chemo bag labels when I got the VDTPACE in November, 2013 and saw that was the same strength that I am getting today.
The side effects of this chemo should start soon and should last 10 days or more days after the chemo start day.

June 25, 2017.. It has been an uneventful day of just getting the chemo and being in the room. Tonight, they will hang the last two bags of chemo that will be pump out about 9:00pm tomorrow night. I will be glad to get unhooked from these lines and pump.

June 23, 2017.. This is the first time I have been able to post an update since the last posting I did on June the 8th. I will try to post the most important things that have happened since then. Remember I want to post them in such a way so that I can reference them later for information. I wish I had done every blog when we come here under the same blog. I see the value in having them all together and I also wish I had given the blog a different name not referencing a time in the title. I fear if I would change it now, it would change the link for people following now.

The posts from today on, for this blog, will probably made using email since I won't have access to the computer. 

Starting after June 8th:

June 9th - 10th, 2017..  Went to hospital to be admitted and got settled in the room. 

During creating this posting which I had completed up to today except for few additions, the computer shut down and I lost everything so I will attempt to recreate what I had. 

June 11th - 12th.. Prepare for surgery and get surgery in the morning on the 12th. Surgery lasted for about 2.5 hours. They had predicted it would take 3 to 5 hours. Our dear friends Steve and Kathy from back home drove over 1200 miles to visit us and give us support. 

June 12th - 22nd.. Spent 10 days recovering from the surgery. During this time I received blood and platelets. As of now, I have received 6 units of blood. I have not kept up with the platelets I have gotten so far but guessing it is about the same number of bags as the blood. Our dear friends Wayne (Ken) and Peggy from back home drove over 1200 miles to visit us and give us support on the 20th. 
Started VDTPACE chemo combinations at 8:30pm. They will be pumping in around the clock for the next 4 days.

June 23rd - 24th.. Not feeling any side effects of the chemo yet. 
They tell me they will start about day 6 through 10. This is when my blood counts will drop so much.


  

June 8, 2017..  I am really sorry that this post is so late. We spent another day at the hospital then had to get supplies. Creating this post will take a long time. 

I will try to fill you in as well as I can. I will not be coming home anytime soon. The tests show that the myeloma has created lots of new lesions and created some damage that has to be repaired. They will have to get the myeloma under control but first, the damage will have to be taken care of. The damage that is a problem is in my neck. This damage was not there when I was here in late February/early March. It is important to get it repaired quickly because there is not much remaining on one side of a vertebrae. If this should break, it could cause me to be paralyzed. I have to wear a neck collar all the time except while in the shower. With no lifting or driving because if it broke while driving, I would wreck. It will have to be repaired surgically. I will have to be admitted to the hospital tomorrow as early as I can get there then have surgery on Monday. The reason to be there early tomorrow is because tests have to be run there and they are not done on the weekend. The surgery will take about 3.5 hours and I will be in the hospital 3 to 6 days afterwards. I will then have to wait after surgery about 10 days before I can start the chemo to reduce the myeloma. The doctor that will be doing the surgery (the one I saw today) also does a health program on radio on NPR. His name is Dr Thomas Pait. Dr Van Rhee, who is my doctor, said Dr. Pait is without a doubt the best myeloma damage repair surgeon in the world.

The chemo that I will go on is called VDTPACE. Each of these characters represent a chemo and is pretty powerful stuff. I got it in 2013. It is pumped in 24 hours a day. I am not clear how many days I will be getting it but my understanding was it will be 3 weeks. It can make a person pretty nauseated. I now take 20 mg of Dexamethasone at one time each week. It causes me some sleeping problems. In VDTPACE the D is Dexamethasone and I will be taking 40 mg every day. After I finish this, I will find out what my next treatment will be. 

As far as I know, I will not be able to post to this blog for awhile. If you are on a laptop or desktop computer, you will have the ability to get an email when I start posting again.You can click "Subscribe to: Posts" at the very bottom of the page for the posting for October 5, 2013. You can expand each year in the table of contents by clicking the triangle etc. to easily get to the oldest posting to subscribe. 

We were so fortunate to get an apartment at "Home Away from Home" where we have stayed so many times before. We will move there early in the morning then be at the hospital as early before noon as possible. 

I will post again as soon as I am able. Please keep us in your prayers. Thanks so much for caring.  

June 7, 2017.. I finished with all the tests today and I am glad. It has been really difficult to get them all completed this time. They even changed the times today from what I posted last night. I had the bone marrow biopsy at 7:30am and finished it about 10am then I had the PET scan at 3:45pm and finished it about 5:15pm. 

I had to get an extra blood draw to rule out my IV port as being a source of infection. I have been running a fever, at times, for quite a while. Monday night it got up to 102.4. Normally, it runs about 99.5 to 100.4. In the meantime, the APN prescribed a Z Pack for me and I have started taking it.

I would like to say a big hello to my dear brother and his wonderful travel companion Shirley. They are now on a tour of England, Scotland and Wales and reading this blog. I was surprised to get a text message from them and surprised, that they, along with others were reading this blog. 

Kathy and Darlene, thank you so much for your nice comments. They really mean a lot to me.

Tomorrow, I see the doctor and find out what the tests reveal and a plan for the future.

Thanks for following along with us.  

June 6, 2016.. I thought I had better put in an update on my schedule while I have time. They called and have changed my schedule for tomorrow to getting the bone marrow biopsy at 7:30am instead of noon. I am scheduled for a PET at 8:45am and I have to drink some kind of liquid and they said after I drink that fluid, I could not get the bone marrow for another 6 hours. I was not originally scheduled for a PET on this visit here but the APN yesterday thought I should get one. She had someone check to make sure it would be covered by insurance and then it was scheduled. The cost of the PET is over six thousand dollars.

Today, I get a unit of blood at 4:30pm, a CT scan at 6:30pm and another MRI scan at 8:30pm. I hope they are not running late on any of these since it that would cause us to be even later. The MRI I get tonight takes about an hour after it starts.

I most likely will not add anything to this post tonight due to getting back to the room late. 

Trip to Little Rock Earlier Than Expected

June 4, 2017..  We were called to come to UAMS earlier than we had planned. My appointments here were set starting June 18th but the samples that they ran on May 25th showed my myeloma markers had gone in the wrong direction quite a bit. They called last Wednesday and told me I needed to get to UAMS as soon as possible. They started trying to get me scheduled and we made preparations to make the trip. We made the trip on Sunday leaving at 7am EDT and arriving at Little Rock at 5:30pm CDT. I am convinced Sunday is the best day to make this trip due to lower volume of trucks and other traffic. I am sorry I was not able to post anything last night because I was so exhausted and not feeling well, I just could not do it. We could not get an apartment with Home Away From Home as we normally do because their apartments were occupied. We are staying at Towne Place Suites. 

June 5, 2017..  I went for testing today but things did not work out as they had planned. I was scheduled to get a sedated bone marrow biopsy but after seeing the results of my blood tests that were taken earlier in the day, the APN scheduled for me to get a unit of blood. The problem came in when there were long delays in getting the blood ready and the time it took for it to be transfused. I had a firm appointment to get the biopsy at noon but they called at 1:15 and said they were going to have to cancel the biopsy. I did not finish getting the blood until about 1:30. It was a very frustrating day. I did get a scheduled MRI later this afternoon. I will have to get a different type MRI tomorrow and a CT scan along with another unit of blood. The appointment for the MRI scan tomorrow night is set for 8:30pm. We had to wait for 1.5 hours after our MRI appointment time today before I was able to be scanned. The scan tomorrow night takes about an hour so we will probably be late getting back to our room and not be able to post to the blog. The APN that was taking care of things today is absolutely wonderful. We have had some contact with her since 2013 but not until the last year or so did we get to see how good she is. She is very dedicated and caring. She was covered up with work today but went the extra mile to see that I was getting the testing and care that I needed. When we left, she gave me a hug and my face only came up to her shoulder. She is really tall and slim. I sure have lots of respect for her. I am thankful there are people in this world like her.   

March 3, 2017..  We got up at 5am to get ready to leave but we didn't get away until 8:40am. We had a sunny drive back home with no delays along the way. We arrived home at 8:20pm. 

March 2, 2017..  I had to get the biopsy today on the area in question at my navel. I sure was not looking forward to it but actually dreaded it. You see, the coward in me really shows up. The thought of going into my belly button with something that is going to stick a hole in it and pull out a core sample just really gets under my skin. The procedure actually did not hurt much just the thought of it and the feeling that he was pushing all the way to my back bone in order to get the sample. No, not really...I think my imagination must have been going a bit wild. I will not hear from the results until about the middle of next week. I am praying they don't find any type of cancer there. 
We met with one of Dr Van Rhee's nurses again today to ask some last minute questions before we left MIRT. She has been so helpful not only here but I have emailed her several times on things I needed and she always has gotten them done for me. 
When we were in infusion getting my treatment yesterday, there was a new patient in the cubicle next to us that was from Clintwood, VA. It was nice to meet someone from our part of the country. This was their first trip here. He had been a school teacher in the Clintwood area. They seemed like real nice folks. 
We are trying to get things packed up for leaving in the morning to head home. We do plan to make the drive in one day again. I keep saying that I am not going to do it in one day in the future, but yet we still do it in one day. It seems like each trip gets harder and harder to make like that. On the other hand, it is hard to stop and unpack and then repack things the next morning to get back on the road when we stop to spend the night on the way home. I am just too accustomed to traveling with a camper, I guess.
I want to thank each of you for your comments, notes and text messages, but most of all, I want to thank you for your prayers. 

March 1, 2017..  I am sorry I am so late posting tonight. We just now got home from UAMS and it is 10:20pm CDT. The doctor, nurse practitioner and an RN were there with us to make sure we understood the new diagnosis and what we need to do in the future. We were there over 12 hours today. We did have to make a stop by a CVS and that took about 30 minutes.

I don't know where to start but I will try to explain things the best I can. The news I got from the doctor today was not as good as I expected. The Darzalex was working with only mixed results. It was producing much better myeloma marker results (the tests for myeloma done from blood samples) but was allowing the myeloma to grow and do damage in the bones. In July 2016, I had no bone lesions and in late November 2016, I had two. This time I had five. These were visible on the PET scans and on the MRIs. Most of these were in my neck area with one in my ribs. 

One of the nurse practitioners told me Sunday to tell Dr. Van Rhee about the umbilical hernia I have. He examined it and fears that it might be myeloma instead of just a hernia. He was looking at it on the MRI and PET scans and could see nothing coming through the abdomen wall as it would on a hernia. We were planning to leave to come home tomorrow but we have an appointment for a biopsy from the navel to check to see if it is just a hernia. They will do that without the benefit of me being sedated. I do dread that. Tonight I even had two resident surgeons that were checking the hernia. 

Another bit of news that I didn't know but it was determined when I was here in November that I have gone from being low risk to high risk myeloma. This was determined by doing a gene array in November from my bone marrow biopsy. This test is not done very often. I guess the reason it was not mentioned in November was due to my doctor being gone to the ASH conference and I saw his replacement. 

I will stop the Darzalex/Pomalyst/Dexamethasone treatment and go on Cytoxan/Pomalyst/Dexamethasone. I will get the Cytoxan by IV every two weeks. 

This was not a day for good news, but there is always some good news hidden within even bad news. Thank you everyone for your continued prayers.