December 5, 2013.. Today was a turning point. I went for apheresis but there was not enough stem cells collected to continue. They did an estimate during the apheresis and thought I would get 200,000. I actually got 300,000 stem cells today but it was not enough to continue. I was not surprised after yesterday's small collection. 

We got up at 4:30 this morning and were at the hospital all day. After we finished at apheresis, we spent the remainder of the day meeting with the doctor's assistant, checking out, and getting the line removed. We got to the apartment at 5pm. Due to the ice storm coming in tonight, we intended to try to get on the road home and drive as far as we could to try to get ahead of the ice. Doing that is just not possible. We are mentally and physically exhausted. We fear the ice will be here when we are ready to get on the road tomorrow but we will just have to see how it goes. 

My white cell count today was 23.35, hemoglobin-9.4, platelets-79, and HPC-4. 

Good news... I was able to get my broken water line repaired so we will have water when we get back home.  

Some of the nurses in Infusion 4 continue to amaze me. We have grown very fond of many of them. We went by to say goodbye before we left. It was like I was leaving close and valuable friends. Most of them gave me a warm hug. It sure makes the situation easier to bear. I know they really do care. 

We are scheduled to return here in mid January for Dr Zangari to determine what my future treatment will be. The doctor's assistant said my myeloma is stable at this time, so that is good news.  

This coming Saturday, we will have been gone 6 weeks. According to a spreadsheet I keep on medical travel for this year, the total is almost 6800 miles. 

As I close this blog, for this time, I want to sincerely thank each of you for your prayers, cards and notes. Your caring has really meant a lot to us during a hard time both mentally and physically. 

December 4, 2013.. My white cell count today jumped to 24.88, hemoglobin-9.9, platelets-138, and HPC-4. I feel sure these nice gains were due to the Mozobil injections last night. 

My first day of collection did not go like I hoped. They collected 400,000 stem cells today. The first time I collected back in May was 1.8 million. I do go back and collect again tomorrow but I am told the amount collected is usually lower then the first collection. I have now 5 million in storage. The doctor said I need at least 15 million.

I forgot to add to the log yesterday. I got an infusion of Rasburicase. I want to add this to the log for my referral later. 

Today, I got the same injections of Neupogen I have been getting, plus I got another injection of Mozobil. The Mozobil makes me nauseated for a few hours after I get the injection.   

When the collection is finished, I will have to see my doctor to get his plan for me. I am not sure when I will finish with collection nor when I will get to see the doctor. Hopefully we will get to leave sometime next week. 

They are forecasting a big ice storm coming into Arkansas starting Friday morning. It was 77 here today but by this weekend, the high is forecast to be only 26 with ice and snow. It sure would have been nice to be out of here before the ice hits. 

I thought I would post a couple of photos since I have not posted any recently.

This is what the new Quinton catheter looks like. It replaced the other port yesterday.

Here I am today in Apheresis

December 3, 2013.. My white cell count today dropped back to 15.39, hemoglobin-9.7, platelets-142, and HPC-2.

Going to Apheresis Tomorrow!

The doctor in apheresis came up with a plan. She wanted to start the collection tomorrow and see how it goes. If I can't collect enough, they will stop it. I knew the slow gains on my counts could not continue to go on as they were. Today, I got the smaller port removed. It is the port I explained in detail earlier in this blog and the one they have used to take blood samples, give me blood, medication, etc. The port (Quinton catheter) that was installed is much larger so the stem cells can be collected. It was pretty uncomfortable when they put it in so I am glad that part is over.

Our day will start an hour earlier tomorrow. We will have to be at apheresis at 7am. They will take blood samples and should have me hooked to the machine by 8am. The apheresis process takes 200 minutes per session. The maximum number of collections I can possibly get now are 4. 

I started on the high-priced drug Mozobil tonight. I had to wait until almost 6pm to get the injections since it reaches maximum effect in 11 hours after it is injected. I will get 3 injections in the tummy each night now instead of two. 

Please pray for a good collection tomorrow. Thank you in advance. 

December 2, 2013.. For some reason today, my counts lost ground instead of gaining. My white cell count today was 16.24, hemoglobin-9.6, platelet-173. and HPC-1. This gets to be very frustrating since there is nothing I can do to affect it, that I know of. 

The APN today said she had sent a note to Dr Zangari asking what they should do next but she did not hear back from him. I told her I had noticed during the collection time for me in April, the counts make big increases when they started with the Mozobil injections. She said those increases are expected when on Mozobil but they cannot start the Mozobil injections until the forecast is for me to be able to collect at least 300,000 stem cells during the first collection.

They are forecasting winter weather with snow and ice for Little Rock later this week. I sure do hope that does not happen.  

December 1, 2013..  My white cell count today was 16.89, hemoglobin-9.7, platelet-177. and HPC-1. I didn't gain much today and lost on some counts. I wish I knew why.

I got another liter of saline today by iv due to low blood pressure.  

I know I have mentioned several times how good some of the nurses have been to us in Infusion 4.  One of them told Reta the other day she was going to being me a surprise. Today she brought a homemade apple pie to me. She made the pie even though she was working a 12-hour shift and cooking for Thanksgiving. I sure did appreciate it. They are really good to me. 

November 30, 2013.. My white cell count today was 16.56, hemoglobin-10.0, platelet-186, and HPC-1. I am thankful my white cell count is finally making some good gains. 

We made the two trips to the hospital today and I got the 4 injections as usual. My abdomen was getting really red from the injections but seems to be clearing up some.  

I didn't get to talk with an APN today. When I was here before, I would normally see an APN each day but this time, I go several days without seeing one.

We hope everyone has had a wonderful Thanksgiving. We decided to postpone ours until the collection is over so we could enjoy it more.  

November 29, 2013.. I made a pretty good gain on my white cell count today. My white cell count was 14.84, hemoglobin-9.9, platelet-186, and HPC-2.

I got an infusion of Rasburicase today. It was the second one I have received due to high uric acid. The chemo and its effect can cause high uric acid.

There is nothing much to report today related to the two trips to the hospital. Driving to and from the hospital has been so much better yesterday and today. There was almost no traffic so it so much nicer making the drive. 

We sure are hoping tomorrow my counts will be even better than today. With gains like today, I don't think they will stop the effort without sending me for collection like they did the last time.

Tomorrow will be 5 weeks we have been here in Little Rock, and every day we have been at the hospital. Twenty two of those days, we have gone there twice.  

November 28, 2013.. I did not have much gain on my white cell count today. My white cell count was 12.37, hemoglobin-9.6, platelet-191, and HPC-*.
* I do not have the HPC count for today. I will post it later tonight if I get it. As of Friday morning, this is still not available when I log into my UAMS account. I will post later.

We had to go to Infusion 4 early today. They wanted to shut down early for Thanksgiving so we had to be there at 7am and 2pm. When I got my injections after 2pm, I was the last patient there. I did not talk with an APN today.

Things don't always go well when we are away from home. My neighbor called today and said there was water coming up in the road where my water line runs. It appears that, in the approximately 800 feet of water line from my house to my water meter, a leak has developed. He turned the water off for me at the meter. I always turn the water off in the house when I am going to be away for an extended time.  

I am ready for my counts to do better in the next few days.  

November 27, 2013.. My white cell count today was 11.95, hemoglobin-9.7, platelet-180, and HPC-2. I didn't make much gain on the white cell count since yesterday, which was 11.79. 

I talked to my APN today. She has been off and I have been seeing one of the others for about a week. She had asked the people in apheresis what my white cell count should be when I am ready for collection. She said they reviewed my collection in April and they predicted I would be ready when my white cell count gets to 21. She said they would not put a halt to the whole process as long as I am making nice gains in my blood counts but if that slows down, they will stop the effort. The whole production of stem cells seems to be a mystery. By that, I mean it seems that no one knows what makes the counts go up. I am very willing to do anything I can to get the counts to go up but they know of nothing I can do.

I learned today a body of an 18 year old male had been found on Burlington Road in Church Hill, about a mile from our home . I don't know yet what happened. 

Reta and I want to wish each of you and your families a very blessed Thanksgiving. I am so very thankful for your support and caring. Although we can't be with our family this year, we are still very thankful for the many, many blessings we have received.  

November 26, 2013.. When we got to Infusion 4 this morning, emergencies were all around. Three patients where having problems and they had called EMS for them. The nurse told us later they were all admitted to the hospital. It was really hectic at one time with the nurses running to help. One of them said the chemo is really hard on the body. We had seen EMS taking people out before but never three at once.  

My white cell count today was 11.79, hemoglobin-9.9, platelet-182. and HPC-2. This is the best move my white cell count has made during this collection effort.

Today, I received one liter of saline by iv and a medication by iv to reduce uric acid. This process is causing high uric acid.  

When we got back from the hospital today, the lady from Little Rock Church that we rent the apartment from had left us gift cards to a restaurant to use at Thanksgiving. We have so many things to be thankful for, we will have to add this one to our list too. It seems like they just can't do enough for patients staying here. 

Angela and Gordon asked a question yesterday, so I will try to explain more about the blood counts and how they fit in with the collection of stem cells. Please understand this is the way I understand it and it might not be totally correct. The need to have the hemoglobin higher than a particular number is because it will drop during the collection process (or apheresis). Low hemoglobin starves the body of oxygen and that is not a good thing for the brain. The stem cells normally stay in the bone marrow where they can become either white blood cells, red blood cells, platelets etc. The growth factor I am receiving (Neupogen) creates lots more stem cells thus creating more white cells, platelets etc. There gets to be so many stem cells from the growth factor, they start coming out into the bloodstream and then, they can be collected. If the stem cells are not coming out into the blood stream enough, another drug can be given 12 hours before apheresis to cause them to come out more. This drug is Mozibil. This is the most expensive drug I receive and is over $20,000 per injection. They will not give more than 4 of these injections. The stem cells are frozen and stored after they are collected for use later after lethal doses of chemo are given to kill everything in the bone marrow. This process is done with the hope of killing the Myeloma. Once the bone marrow has been wiped out, the stem cells are given back to the patient to allow rebuilding the bone marrow. I hope this helps explain why I am posting the numbers each day and why they are important. 

By the way, Angela and Gordon are our friends who founded and publish an online truck camper magazine. Click here to check it out.

November 25, 2013.. We missed the snow and ice storm today and I am very thankful for that. We got up at 4:30 this morning and hurried to get ready to go to the hospital. We wanted to get there before problems with the heavy traffic and bad road conditions. We got there at 6:25 and no ice on our route.

My white cell count today was 9.0, hemoglobin-8.9, platelet-152. and HPC-0. I sure wish I knew why my HPC level dropped. I received another unit of blood today. My hemoglobin needs to be above 9.0 to go for collection. I am not clear why they went ahead and gave me the unit of blood since I am not ready to go for collection. 

I continue to be concerned about getting the stem cells collected. This is day 19 of the Neupogen injections. The last attempt at collection in June, they stopped the effort after 21 days of injections. I hope that does not happen this time. The doctor told me during the last collection attempt in June my survival depends on getting the stem cells collected. I talked to an APN today and told her I did not what to halt the effort again. She said she did not think they would as along as I was showing gains in my counts. 

I found out today apheresis is closed on Thursday and Friday this week. They are normally closed on Sunday also. Their holiday schedule almost eliminates my going for collection this week even if my numbers get better.

Before the nurse gave me the evening injections she stopped long enough to say a prayer. I appreciated  her doing that. Like I have said before, this is a special place with special people working here.  

Here we are in Infusion 4 where we go for the injections.

Getting a unit of blood in Infusion 4 today

   

November 24, 2013.. There is a winter storm watch out for tonight and tomorrow for this area. They are forecasting sleet, snow and freezing rain tonight and tomorrow. Our apartment is on a hill so I relocated our car farther down the hill but the whole apartment complex is on a hill. I hope we don't have a problem getting to the hospital in the morning.  

My white cell count today was 8.13, hemoglobin-9.0, platelet-132, and HPC-1. Of course I was disappointed to learn my HPC had dropped again.

We made the two trips to the hospital today for the 600 and 900 mcg of Neupogen injections.

It looks as if we will not be able to make it home for Thanksgiving. I really hate that because I know Reta really wanted to be there for the holiday. She is not complaining at all though.  

Here is the updated chart I created showing my white 
cell count from my previous attempts at collection.  

November 23, 2013.. My white cell count today was 6.77, hemoglobin-8.8, platelet-105, and HPC-2.

I sure am glad to see the HPC has gone back up. I still need quite a bit to go on that number for a good collection.

I got the 600 and 900 mcg injections of Neupogen today but I did not get any extra infusions. I expect I will get another unit of blood soon due to my hemoglobin level.

I know I have said this before but I will say it again, there are so many nice people here at the hospital. We go to Infusion 4 twice a day for the injections. We are greeted as if the people are so glad to see us. It is as if we are close friends to some. I have said this place is different than any medical place I have been. For example, a few days ago, we went to check on a bill we have been getting. The nice lady told us what we needed to do and as we left, she gave us both a hug, gave us her phone number and invited us to have Thanksgiving dinner with her if we are still here. I can't imagine that happening at the hospital back home. The way it is here sure makes the situation more bearable and I am thankful.

November 22, 2013.. My white cell count today was 4.96, hemoglobin-8.2, platelets-85, and HPC-0. I have no idea why it dropped back to 0 after being 2 yesterday. The HPC count is a predictor of how many stem cells can be collected. 

We were at the hospital about 6 hours today. I got 600 mcg Neupogen in the morning and 900 mcg in the evening injection. 

I failed to mention yesterday I got a liter of saline and today I got a unit of blood due to the low hemoglobin. 

The APN told me the flu shot I had gotten back home would not do me any good. She said the chemo had eliminated the immunity my body had developed against the flu. She said I would need to take Tamiflu all during the flu season. I have gotten a prescription filled for one month but I have not started to take it yet.

I have been able to again go into stores with Reta so now I can help her get groceries. I will continue to take precautions. I sure don't want to pick up a cold or anything since that could affect my stem cell collection.  

November 21, 2013.. My white blood cell count today was 3.91, hemoglobin-8.7, platelets-70, and HPC-2

The APN today sent us to apheresis to get the paperwork completed in order to do the collection when my numbers indicate I am ready. I also completed the paperwork when I was here in June but my body did not cooperate and I never got to go for collection. 

November 20, 2013.. My white cell count today was 3.22, hemoglobin-8.7, platelets-56, and HPC 1. 

Seems like we spent the whole day at the hospital today. We had to get the injections both times and also went to check on a question on my UAMS bills. Tonight after the evening injection, we went to a presentation on the myeloma drug Velcade. It was educational and we are glad we went, but we did not get home until about 8pm. A patient at the presentation from California said she spends 6 months out of the year in Austria. She said when she found out she had myeloma, she asked her oncologist what was the best place in the world to go for myeloma treatment and he said Little Rock and when she was in Austria, she asked the same thing and was given the same answer. It makes me feel better about being a patient here.   

While we are in Little Rock, we are totally immersed in myeloma. It is like another world. It would help so much if we could just stop everything and get away for a day or two while we go through this but that is not possible right now. Hopefully things will change.  

I was really glad to see my HPC come up. I hope it will continue.  

November 19, 2013.. Today my white cell count was 1.95, hemoglobin-8.9, platelets-43, and HPC-0. 

The APN had told me yesterday she was going to delay increasing my dosage to maximum but today there were orders for the 4pm injection to be at maximum of 900 mcg. The dosage is 600 mcg in the morning and 900 mcg in the afternoon. That will probably be the dosage until the collection is finished. My APN was not there today so it might have been the apheresis doctor that increased the dosage. 

The APN that was filling in for my APN today told me I would need to take Tamiflu all through the flu season. She said the flu shot that I got would not help me now. I am going to check further on this before I start taking the Tamifu daily. 

As we walk through the parking garage each time, I check out car tags to see where patients have driven from. I have been seeing one from Virginia there that had a sticker on it from Morgan-McClure in Castlewood and Coeburn. Last week, I saw one from Morristown so there are folks from near back home here too. Today, I also saw one from California and Colorado. There were many other states but they were the farthest.

Thanks to each person who has left a comment in the blog. Although I don't reply to the comments, I read each one more than once. 

I am so thankful for Reta to be by my side each minute of the day. She gets up each day at 5:30, goes with me to the hospital, stays with me for many, many hours and then takes care of things in the apartment like preparing food and keeping everything going. I will be forever thankful for her. 

Photo I made today of a church along our route showing the leaf color. 

Photo of UAMS..The glass covered building on the right is where we go each day. That is the Myeloma Institute for Research and Therapy (MIRT)

November 18, 2013.. My white cell count today was 1.42, hemoglobin-8.7, platelets-33. The HPC count was 0. During the past week, my C-Reactive Protein has been a bit higher than it should be which can indicate an infection. It has dropped and is now within limits. I have felt good today. 

The trees here are at about their peak in fall color. On our drives each day, we see the Bradford pear trees color in full beauty. The colors range from yellow to bright red on the same tree sometimes. They are beautiful. I have never seen color like that on Bradford trees at home.  
  
I got the 600 mcg injections of Neupogen twice today. My APN said last week she planned to increase the dosage to maximum but has changed her mind for now because my white cell count is recovering at the rate she expects. The dosage might need to be increased later.

We did not see the folks we had met from Tulsa today. That means she was successful in her stem cell collection this morning and there was no need for them to come to infusion 4 where we go for my injections. We missed talking with them and comparing notes on this disease. 

Below are some photos of what we look like at the hospital each day. 

An updated chart that I posted a couple of days ago.

  

November 17, 2013.. My white cell count today was 0.75, hemoglobin-8.9, platelets-28. There was a new test added yesterday called HPC (Hematopoietic Progenitor Cells) to my daily blood tests. This test indicates when I am ready for stem cell collection. I was told earlier, when the count gets to 10, I should be ready for collection and they will confirm that with the ProCOUNT. The couple we have been talking with from Tulsa, OK went for collection when her count was 5 and she has collected 13 million so far. She goes again tomorrow so I expect we will not get to talk with them again because when she gets 20 million, they will go home. They were really nice folks. She was a school teacher and he is an attorney and financial manager. We will miss seeing them every day. Yesterday, my HPC was 1 but today it was 0. Later, they will probably also run a ProCOUNT to estimate the number of stem cells that have been mobilized from the bone marrow to the bloodstream. This mobilization must take place before the stem cells can be collected.

I received one liter of saline again today and two 600 mcg injections of Neupogen. 

I heard the nurse I had today mention to someone her family had taken a camping trip. I asked her about it later and she said they had taken a camping trip to Yellowstone this summer. Well, we sure had a lot to talk about after that. They were in Yellowstone about a month before we were and they stayed in one of the campgrounds we stayed in. It sure was nice to be talking about fun things and camping for a change.

I continue to avoid people or wear a mask when I am around any except Reta and the nurse that is assigned to me at the hospital. When we go to get supplies, Reta goes in the store and I stay in the car. Maybe in a couple of days, my immunity will be high enough to go about as usual. 

November 16, 2013.. We made the two trips to the hospital today and got the injections of 600 mcg of Neupogen each time. I also received a liter of saline due to low blood pressure again. The APN told me Thursday she was planning on taking the Neupogen to the maximum dosage on Sunday or Monday. I have not mentioned the cost of these injections but each vial is between $2,000 and $3,000. I am now receiving 4 vials each day.

My white cell count today was 0.36, hemoglobin-8.9, platelets-25. 

I have created a graphic that shows my white cell counts after chemo treatment during my visit here in April, in June and this time. I put the information together thinking I can use the April visit as a predictor of white cell counts during this visit since I received basically the same chemo in April as I did this time. To make the comparison the same, I used the day after the chemo stopped as day one on the chart. As you can see, the numbers have been very close to the same during the April visit and this time. I will keep the chart updated and post again in a couple of days.

In order to enlarge the chart, click on it.  

   

November 15, 2013.. Dear friends and family, thank you for caring enough to be here and following us in this blog. Most of all thank you for your prayers, best wishes, cards and support. 

I felt good today. We made the two trips to the hospital today for the Neupogen injections and all went well. I had to get a unit of platelets due to low platelet count. 

We have become acquainted with two other patients and their caregivers during our visits each day to infusion 4. One of them was from southwestern Kansas and the other from Tulsa, OK. They were both there in preparation for stem cell collection (like me) so we would talk with them in the waiting room each morning and evening. They were ahead of me in the process, one by a couple of days and the other by 3 or 4 days. One of them went to apheresis for collection two days ago (we have not seen them again) and the other is going tomorrow. I sure hope I get to go and have a successful collection that quickly.

My white cell count today was 0.20, hemoglobin-9.4, platelets-17 (before I received the infusion of platelets) 

November 14, 2013.. Tonight when we got back from the hospital, a bag was at our door with a homemade throw in it. It was from a member of Little Rock Church. I was surprised that my name was embroidered in 2 inch letters on it. The kindness of people really amazes me, both people I know and people I don't know. Let me explain again that Little Rock Church rents 13 apartments in this apartment complex and then rents them to patients from out of town who are in Little Rock for medical treatment. They are completely furnished. 

Our routine day goes something like this. We get up at 5:30 each morning. This is every day with no days off. After we have breakfast and get ready, we head to the hospital. We have to drive through heavy traffic except on the weekends. We are at the hospital for several hours and once, this time, we were there 6 hours on the morning visit. After we finish there, we head back to the apartment but often we stop and pick up some groceries. (We don't buy much ahead of time since we can't carry much back home when we go so we buy just enough for a couple of days.) We eat lunch when we get back and sometimes take a short nap. Then, its time to head back to the hospital. It is dark by the time we get back to the apartment each evening. 

I received a unit of blood again today because my hemoglobin was lower. I did not get the liter of saline today as I have the past several days. That was due to my blood pressure having better numbers. I got the four injections of Neupogen today. I have had sores in my mouth this time from the chemo. This is the first time that has happened. It is a bigger problem for stem cell transplant patients when they are on chemo. A transplant is probably in my future too.  

Maybe I have turned around and my white cell count is starting up. My white cell count today was 0.11, hemoglobin-8.4, platelets-22.

Thank you dear friends and family for all the support I have gotten. It means more to me that I can express and I really mean that. I want to especially thank you for your prayers.  



   

November 13, 2013.. I have been receiving one Neupogen injection in the morning and one in the evening since I came off the chemo. The evening injection today was increased to two injections. That means I will be getting 4 injections each day until the collection is complete. The total Neupogen was 480 mg per visit but today it was increased to 600 mg per visit but in a couple of days it will increase to 900 mg per visit. All of the injections I get are in the abdomen. 

I felt better today than I did yesterday.

My white cell count was 0.08, hemoglobin-8.8, platelets-31. If my hemoglobin drops to 8.5, they will probably give me another unit of blood tomorrow. 

I would like to get an idea of how many and who is reading this blog. In the comments block, please click on the Comments option below and leave a short note like "I am" and enough of your name so I will know who you are. The stats for the blog sometimes shows high numbers (100 or more at times) of readers. I find it difficult to believe there are more than a few people actually reading it. 

November 12, 2013.. We spent 6 hours at the hospital on our first visit of the day, but thank goodness, the second visit was short and just long enough to get the second Neupogen injection. I received another liter of saline and another pint of blood. Each of those takes one hour to administer. I also received my last injection of Velcade so that totally completes the chemo for this trip. 

I did not feel as good today as I have in previous days. The chemo is continuing to have effects on my body and will for quite a while yet. I have to wonder what negative things are being done to my body by the chemo. I have to look at it as not having much choice but to take the chemo. 

I am hoping today was my low point day and things will start to improve now. 

It is good to see the nurses in the area where we go. We have seen them many times in the 2.5 to 3 months spent here this year. We are always greeted with big smiles, and it seems as if they are really glad to see us. Today we were talking with the nurse who has taken care of me the most while I have been here and found out she lost one of her two children when he was 7.5 years old. He was run over by a school bus. We just don't know what grief the people we meet each day have encountered.

My white count today was .08, hemoglobin-8.3, platelets-42 

Note to our friend Shirley in Michigan... There was a car from Michigan in the hospital parking garage today with a myeloma awareness sticker on it.  

November 11, 2013.. We made the two trips to the hospital today for the two injections of Neupogen. I also received another liter of saline by iv due again to low blood pressure. Tomorrow, I am scheduled to receive my last injection of Velcade. We are praying it does what it is intended to do. 

I felt pretty good today. Six days after ending this same chemo in April, I reached a low point in the way I felt and in my white cell count. Tomorrow will be the 6th day in this round of chemo. It will be interesting to see if I follow the same pattern this time.   

Something worth noting; tomorrow at 10 seconds past 8:09am, the time and date will be 8-9-10-11-12-13. This is the last time a sequence like this will occur this century.

My white cell count today was 0.12, hemoglobin-8.9, platelets-59.

November 10, 2013.. I continue to have a problem with low blood pressure so I received another liter of saline today by iv. The APN said that she wants to keep my hemoglobin at or above 8.5 so when it goes below 8.5, I will need to receive more blood as I did yesterday. I continue to get the two Neupogen injections each day.

I failed to mention one of the things the doctors said at the question and answer session that I posted about earlier. They said in earlier years they were seeing myeloma patients aged 65 years and older but now they are seeing much younger patients some even in their 20's.

I am looking forward to all my blood counts bottoming out and starting to rise again. I hope that will be soon. I am staying away from people except when I am at the hospital and then I wear a high filtration mask. I have the fear that I will catch something before I get my immunity back.

My white blood cell count today was 0.14, hemoglobin-9.1, platelets-67.

November 9, 2013.. We made the two trips to the hospital today and got the two injections of 480 mg each of Neupogen. That dosage will increase later to double that amount. I also received an injection of Velcade. This is the V in the chemo treatment VDT PACE that I mentioned in an earlier posting. I will receive one more Velcade injection on the 12th. I also received one unit of blood today. 

Tonight, I am thinking the injection of Velcade is what is making me feel not as good as I did earlier today. 

My white cell count today was 0.46, hemoglobin-8.4, platelets-78

November 8, 2013.. We were at the hospital about 5 hours today. Both trips took longer than usual. The 4pm injection sometimes only takes a few minutes, but today we were there for 1.5 hours. The nurse was just too busy to get to me. I had a problem with low blood pressure this morning and had to wait until I could receive one liter of saline by iv. The chemo is causing my blood pressure to be low. The APN keeps a close eye on things, and if all remains the same, I am scheduled to receive a unit of blood tomorrow in order to keep my hemoglobin higher than what it is now. 

I continue to not sleep well at night so I must catch up between trips to the hospital. Overall, I have felt ok today. 

My white cell count today was 1.43, hemoglobin-8.8, platelets-106

FYI... A round trip to the hospital each time is 13.2 miles. 

November 7, 2013.. We made the two trips to the hospital today for the Neuopogen injections. These injections will continue until the stem cell collection is complete. 

My white cell count today was 1.32, hemoglobin-8.6, platelets-119.

I had forgotten how much my sleep was affected the first time after getting the chemo. It sure wrecks a night's sleep as it did last night for me. I hope that improves soon.

We went to the question and answer session tonight at the hospital. Two new doctors were the ones answering questions. One of them was Zangari (my doctor). It was time well spent. One of the things they said was one food supplement they would recommend was vitamin D3 with calcium. They felt it was very important to get enough vitamin D, but D3 depletes calcium so that is the reason to also take calcium. 

We knew some folks that attend our myeloma support group in Johnson City were here at MIRT this week but I had not seen them. We finally got to see them at the question and answer session tonight. It was good to see someone from back home. We sure wish we were going back with them. They leave to go back home tomorrow.  

November 6, 2013.. Today was a cool, windy day in Little Rock and raining part of the day.

I finished with the chemo pumps today so I am not carrying the bag now. We were at the hospital about 2 hours today. It feels good to be able to walk around normally now and not have to be concerned that I am going to hook the little hoses on something and pull them loose. There are some people here that are on a 28 day regiment using the chemo pumps. It would be hard to do that for 28 days. 

I have felt good today. I expect that my low point will be in about a week or less. I am not sure why there is a delay. I guess it takes that long for the chemo to have its full effect. During that time, my white cell count will drop to a very low level as well as other blood components. I will begin the two injections per day of Neupogen, one at 8am and another at 4pm. This injection is a growth factor and will cause the white cells to start returning. The last times I was here, they doubled the growth factor injections so I was getting 4 shots per day of Neupogen. While my white count is so low, I will avoid other people as much as I can and wear a mask when I am around other people. 

I saw an older and frail man in the infusion area. The nurse asked him how many stem cells he got today and he said they got 71 million. It is hard to believe how much I have had to do to get 4.6 million so far.

My white cell count was 1.96, hemoglobin-9.2, platelets-140

Happy Birthday tomorrow to my sweet niece Dianna.  

November 5,2013.. I felt much better today than I did during the evening hours last night. I took the last of the Dexamethasone (this is what is causing the high blood sugar and fluid retention) this morning. I mentioned in another post that I was on VDT-PACE chemo. The D stands for Dexamethasone. Tonight I will finish with the Thalidomide. This is the T in the VDT-PACE  This Thalidomide prescription had to be special ordered the last time I was here and I had to personally talk with the sender. They keep really tight control on who gets it due to the bad birth defects it caused in the 1960s. One prescription cost over  $7,200 for 28 capsules. I will be off the remainder of the chemo tomorrow after the disconnect at 3pm. It will be good to not have to carry this around 24 hours a day, and taking a shower sure will be easier each night. It took me awhile to figure how I was going to do that with the pumps attached to me, but found it quite easy since the shower has a removable shower head on a long metal hose.

In the waiting room today, we met a lady we had seen earlier this year but had never talked with her. She is from California and drives here for treatment. She knew quite a bit about my new doctor (Zangari). She said as soon as word gets out that he is here, people will be flocking to see him. She said I was really fortunate to get him as my doctor. She said he would be her choice of any doctor here. That all sounded like good news to me. We plan to go to a question and answer session Thursday night where Dr. Zangari will be answering questions along with the director of MIRT, Dr. Bart Barlogie. By the way, Dr Barlogie is one of the top doctors in the world in Multiple Myeloma. He sure is different. He is about my age and rides one of the high speed motorcycles (one like the young guys ride). Each day, I see his motorcycle sitting in front of the hospital. It is has been there each night when we leave. The other night it was there when we left about 7pm. We also saw it there both days on the weekend. We look at going to the question/answer session as a real opportunity to be able to hear one of the top authorities in the world on this cancer.

I have previously mentioned some of my lab numbers. I thought I would show you one of the daily reports. Two days a week, I get additional blood drawn to check the Myeloma markers. I had one drawn yesterday but I have not yet gotten the results. We made these photos using the Ipad. Sorry they are not better. The paper appears dirty but it was a shadow on the page.

As you can see, my lab results today were... white count..2.65, hemoglobin..9.0, platelets..158.

November 4, 2013.. I am finally feeling some of the negative effects of the chemo. I know within the next couple of weeks, I will feel much worse. The time I had this chemo before, I reached a low point a week or so after I went off the chemo. We were at the hospital today 3 hours and 15 minutes. We have a different APN assigned to me this time. I feel good about that at this point. 

My lab results today were... white count..3.13, hemoglobin..8.4, platelets..157. 

We saw a couple today that we met here last June. He has myeloma and when diagnosed, it was pretty advanced. He was unable to walk at the time and was very pale. The next time we saw him, he was walking, had gone on a camping trip and he looked so much better. He looked good today and is not receiving any treatment and has not for several months, not even any maintenance treatments. One very sad thing happened to them one month ago. Their home burned and they lost everything. They had photos on his phone and it was a very nice home.  

November 3, 2013.. Are you skinny and need to gain some weight? Come with me, I have the answer for you to become a person larger than you are now. It is hard to believe but I gained 14 pounds since yesterday. That is, if the check-in scales were correct. I did weigh using different scales so that might have caused some difference in weight. In fact, the same thing happened when I was on the same chemo in April. I will lose it soon after I come off the chemo.

We made the trip to the hospital today. I got the chemo bag replaced with a full one. My white cell count had gone up. I don't remember that ever happening when I was on chemo before. Normally the white count goes down, and I know it will in the following days. I was just surprised to see it go up now. White count today was 3.06, platelets-155, hemoglobin-8.8.

All the nurses that attend to patients in the infusion unit are RNs. There must be 20 to 30 of them plus several APNs that are more on the level of a doctor. Some get attached to patients after seeing them so often. Here is one we have gotten attached to. She takes good care of me and says that her patients are like family. You can tell when you talk with her that she really likes her job. 

Here is a photo of her.

  

November 2, 2013.. I am now receiving the chemo. Remember, this chemo is to prepare my body for the stem cell collection. My understanding is the chemo destroys things in my bone marrow, especially the white blood cells and the myeloma cells. I will be carrying the camera-like bag for 4 days and receiving the chemo 24 hours a day during that time. I will be going back to the hospital each day to get one of the two bags replaced and get the batteries changed in both pumps. One of the bags will last the entire 4 days. During these 4 days, I will be taking other medications, some of them to lessen the negative effects of the chemo and some to supplement the chemo. I went to the drug store and got 9 prescriptions filled that will be used during the chemo time and some after it ends.

We were at the hospital today for 5.5 hours. My white cell count today was 1.87 (limits are 3 to 12), hemoglobin 9.7 (limits are13.5 to 17.5) and platelets 188 (limits are 150 to 500).

I have been asked some questions that I will now try to answer here now. 

Time of posting: The time shown at the bottom of the page of the post is in Pacific time zone. I have not found a way to change that to Eastern time zone yet. 

The port: What is the port that was installed used for? The port has 3 connections and is used the entire time I am here until the time I go for the actual stem cell collection. At that time, it will be changed for a larger port. The port I have now is used to receive chemo from the chemo pumps. It is also where they draw blood samples each day, receive medications and fluids that would normally be given by IV, receive blood transfusions (the chemo causes the hemoglobin and platelet levels to drop and requires blood transfusions to restore levels).

What is MIRT? It is an abbreviation for Myeloma Institute for Research and Therapy. I normally refer to being at the hospital but I am at the MIRT part of the hospital. All are part of UAMS (University of Arkansas for Medical Sciences).

The side effects so far have only been slight except for my blood sugar which was three times the level it should have been. That was after a lower carbohydrate meal than I normally have. The doctor prescribed insulin as part of the routine so I took a small injection. Maybe that will bring the level down. I am going to have to be very vigilant while I am on the chemo. 

Here are some photos of the chemo and pumps that I have told you about. I thought you might want to take a look at what I have been talking about.

Below in the photo, is the carrying bag that contains two pumps and two bags of chemo.

One of the two battery powered chemo pumps

One of the bags of chemo. This one will last the entire 4 days.

The chemo bag below is emptied and replaced every 24 hours

November 1, 2013.. I got the new port put in today. It is inserted into the carotid artery at the neck and the other end goes into the right atrium of the heart. It took longer than the previous two times I have had it done. I think the doctor that did it was just learning how to do the procedure. Someone kept telling her things to do and she seemed to be having problems while she was trying to put it in. The bottom line is, I got it put in and all is well. Tomorrow I start on the chemo that will be delivered by the two pumps I will carry in a bag that looks like a camera bag.
After we finished at the hospital, we went to the Old Mill in North Little Rock. It was shown in the movie "Gone With the Wind". Our friend, Dena, had shown us a photo of this mill in a magazine, and we went hunting it today. We are thinking we had better get our running around done while I am feeling like it. I am including some photos I made at the Old Mill. 

October 31, 2013..  Happy Halloween!! We are pleased with my new doctor. We met with him for 45 minutes today discussing what the plan is for the near future. We were also pleased with his nurse who spent at least an hour with us when the doctor was not in the room. We were at the hospital today for 4 hours. I am now scheduled to continue with the third round to collect stem cells. Dr. Zangari said there was no reason why I could not easily collect 20 million cells. I was really thankful to hear him say that I was stable compared to the previous tests 4 months ago. 

I get the ports installed tomorrow at 10am. That will allow the chemo to be pumped in as before and will also allow blood samples to be taken easily. I posted this illustration in the blog I did in our previous visit here but I will post it again showing the positioning of the port. 

 I will start on the chemo Saturday and it will continue for 4 days. The chemo is nicknamed VDT-PACE with each letter representing a drug that is in the mixture. As before, I will carry the pumps all the time during the 4 days and they pump continuously.

I want to thank each person who has said prayers for me during this because they work. I sincerely appreciate it. 

October 30, 2013.. I got the two MRI scans done today. It took 2 hours and 20 minutes to complete both of them. I was really glad to be able to finish with one of them. I was getting pretty uncomfortable by the time it was over.

I see my new doctor (Dr. Zangari) for the first time tomorrow to review my tests from this week and  to discuss his plans for me. As I said before, the doctor I have been seeing is leaving UAMS to practice in Boston. I have no idea what Dr. Zangari's philosophy and plans are for my future treatment.This makes me somewhat uneasy. I will find out tomorrow!

The weather service office is forecasting heavy rain for Little Rock for tomorrow. They are forecasting 4 to 6 inches of rain in some locations here. There is some color coming to some of the trees here, but there has not been a significant change yet.

October 29, 2013.. I went for the PET scan today. The whole process took about 2 hours after I got there. They inject radioactive glucose, wait about 45 minutes and then do the scan which takes up the remainder of the 2 hours. It is hard for me to lay still that long. Today I got an itch on my face and could not scratch it because I could not move. Nothing like having an itch you can't scratch. It was kind of funny now that I can look back on it.
Tomorrow, I have two MRI scans with the first one starting at 12:30. 
We have said so much about how much we like the apartment, I am including some photos of the apartment that Reta made with her Ipad. I would like to be posting some photos we have made around Little Rock but we have not been anywhere to make any yet. 

October 28, 2013.. I started tests today. I got the round of blood tests drawn first thing this morning and then got the bone marrow biopsy that I had been dreading. I am always glad when they have gotten the bone marrow finished. I don't like that at all. It goes pretty smoothly until they do what they call "the pull" during the procedure.
Tomorrow the only test I have is the PET scan. It is at 2:30. I will not be able to eat anything from now until after the test is finished.
I found out last week the doctor I have been seeing since we started coming here is leaving to practice in Boston. I wish she were not leaving. We both really liked her and had confidence in what she told us. I thought it would be best to start seeing the doctor I will likely be seeing in the future so I scheduled my doctor visit Thursday with Dr. Zangari.  

We made the drive again to UAMS on Saturday, October 26th, to Little Rock, Arkansas. The trip from home to Little Rock was uneventful except for two delays due to road construction. We arrived after dark and it was raining but we found our apartment without much trouble. We are staying in the same apartment complex as we did the last two times but this time, we are in a different apartment. The last two times we were here, we had a two-bedroom apartment but this time, we only have a single. It is nice and just what we need. We actually like this apartment more than the one we had when we were here before. It is also $140 cheaper per month than the one we had before. This apartment is one of 13 that are leased in an apartment complex by the Little Rock Church and they rent them to UAMS patients. This ministry is called "Home Away From Home". I am so thankful they do this and we were able to get one of the apartments again. I just don't know what we would have done if we had to stay in a hotel room for this extended period of time. When we arrived, they had a welcome note on the table along with two goody bags filled with different items we might need. One of the items was even handmade.There was also a casserole in the freezer, and today a group from the church delivered a container of homemade soup to each Home Away From Home apartment. One of the little girls in the group had made me a card that had a prayer on it. I am so thankful there are caring people like this in the world.

Our address this time is:

Northwest  Hills Apartments
11701 Mara Lynn Road
Apartment 228
Little Rock, AR 72211

If you would like to look at the blog when we were here earlier this year you can find it at:
http://randjinlittlerock.blogspot.com/