Meeting with the transplant team and the last round of chemo

Monday we met with the transplant specialist to discuss the timeline and what to expect at transplant time. If everything goes as planned, we are hoping for him to have his bypass at the end of January or first week in February. This is the non-invasive off the pump bypass---you know dad the latest and greatest.

Tuesday he was to start his last round of chemo, except that he had a fever and wasn't feeling up to snuff. Dr. Kazhdan immediately wanted him back in the hospital to which he refused. So instead he had a chest XRay, and met with the infectious disease specialist in his office. He agreed to let Dad stay at home, but made Mom learn how to give Dad IV antibiotics. So he now is getting IV antibiotics twice a day. Dad is getting started on some Robitussin for some congestion, but otherwise has no fever. Needless to say, his last round of chemo has been delayed, which delays his bypass and the transplant as well.

Dad had a great New Year. It is the first he can remember that he hasn't had anything to drink. We spent New Year's Day watching football, lounging and relaxing with family. He goes back to Dr. Kazhdan's office on Monday for more labs.

At least Dad didn't spend New years in the hospital! HAPPY NEW YEARS!!

Santa was good!

Santa answered all of our wishes this Christmas. Dad was at home for Christmas, he was mobile and not in any pain. What more could we ask for? Oh, well there is the remission that we are constantly praying for.

We were able to enjoy a nice Christmas at home with Dad. None of us had planned on being home for Christmas, so rather than the usual turkey or ham we had Christmas chicken! Santa brought Dad the Angel of Health, hopefully this angel will start working soon. The best part was that we were able to enjoy Christmas without the anxiety and constant worry of tests, vital signs or pain. Dad was able to watch his grandson tear through presents and play the afternoon away. Mom even got a surprise. Her family was going to arrive the day after Christmas for the holidays. After lunch, while we were sitting around talking, the doorbell rang. Robert answered and we could hear from the tone of his voice he was confused. Out of no where all of Mom's family come screaming out of the hall----SURPRISE! After reminding them of Dad's heart and checking to make sure he didn't have another heart attack everyone greeted one another and spent the evening with family enjoying life.

Today Dad is out for a small outing, changing the lenses on his glasses for stronger pair. Monday should be a busy day, more appointments, including meeting with the transplant specialist. Now that he is more mobile and not in any pain he is anxious to get into the office. He always says his desk job is for the birds. Anyone who knows Dad, knows that he can't just sit behind a desk reading and sending emails. He wants to be in the action. He is hoping this will happen very soon. Anytime we talk he is still so overcome with the outpouring of calls and prayers he receives daily. Everyone from family, friends, colleagues, customers and even his bosses call and send him cards and prayers for his speedy recovery. It must be working, because watching him walk, he sure is speedy!

We have some new pictures that I will post soon. We all hope that you all had a wonderful Christmas, ours sure was!

I'll Be Home for Christmas

Santa must be listening, and he decided to grant Dad's wish early. Dad's home!!!

We don't know what caused the pain that put Dad in the hospital. We know why he was put in the ICU... pain medication overdose. But now he's better. There's no infection anywhere, so everyone agreed to send him home for Christmas. He hasn't needed, nor requested any pain killers. He still has an occasional twinge in his leg, which scares him, but it's nothing he can't tolerate or manage.

Thankfully, Dad will spend the Holidays at home. Thank you all for all of your prayers, especially during that scary time when Dad was in the ICU. At least we know our prayers are answered. Merry Christmas everyone.

Anyone have any sweets? Its beginning to look a lot like Christmas.

So Friday was just a terrifying day for all of us. But the great news is that Dad is back to his usual self. Friday night he was placing his orders for food, including sweets. Mom made the ICU nurses some fudge, to which Dad conned them into bringing him 6 PIECES! They also included the milk. Saturday he ate breakfast, lunch and dinner and was anxious to get back to a regular room. They finally kicked him out of the ICU around 5pm back to the Ritz Carlton of hospital rooms. Dad's room is a suite, complete with an en suite that has its own refrigerator, microwave, TV and DVD player, desk and chairs. The bathroom has a vanity including a vanity chair, blow drier and vanity mirror. Then the room has a couch, 2 chairs, another TV and DVD player.

Today was a little disheartening for Dad. There seems to be conflicting reports on his latest MRI, whether he has a new fracture at L3 or not. The floor doctor thinks this "new" fracture is the cause of the pain in his legs. Dr. Kazhdan doesn't, since the fracture was already there, there is no compression on his spine and everything else looks the same. Tomorrow morning she will talk with the radiologist specifically to see what "new" fractures they are referring to. In the meantime the back doctors will come back to look at him. The bad thing is that his bones can't tolerate surgery in this fragile state. So he is has highs and lows in emotions right now. Dr. Kazhdan did get him up to dangle his legs, which he was able to do without extreme pain. He did start to feel tingling and slight pain again, but they didn't press the issue.

Since his scare on Friday, he hasn't had any pain medication, and hasn't been in any pain. Dr. Kazhdan is going to start to decrease the lyrica dose, in hopes that this is what is causing the swelling and pain in his legs. Some of the information I pulled had a few people have this adverse reaction to lyrica. As well all know Dad has to be special, so maybe this is what is causing all the problems. Time will tell, since lyrica and baclofen have to be slowly tapered off.

In efforts to make his temporary home feel more like home, mom brought a small Christmas tree to decorate the place. Every morning Dad has been listening to Christmas music, so we will just have to bring the music to him. It would have been nice if he could have heard the children caroling in the hall the day he was in ICU. They were 2nd graders and came to sing Christmas carols but weren't able to go into the ICU. We enjoyed it in the waiting room though.

More pain and transfering to the ICU

Thursday Dad was still feeling a good amount of pain. He was great lying flat, but the moment he would try to dangle his legs he would have severe pain his legs would shake. They repeated the MRI to get a better look at his thoracic and lumbar spine to make sure there was nothing new causing the pain. Even though he was receiving a large amount of pain medications he was still feeling pain. They still don't know why. When the floor doc came to check on him, Dad told him he was still in pain so they increased his pain medication dose. Thursday night he was in so much pain he could even empty his bladder. He had a restless night, wanting to get up and go home. The only problem was that he couldn't walk.

This morning they called mom early to ask her to come to the hospital quickly. Overnight Dad spiked a fever and when his day nurse got there, she found him unresponsive. Mom rushed to the hospital, and both her and Dr. Kazhdan were shaking him trying to wake him but nothing worked. They gave him a medication to reverse the narcotics, but that really didn't work. They were so concerned they transferred him to the ICU and put him on CPAP, which an assistive breathing device to help his lungs stay inflated. It looks like a fighter jet pilot mask and sounds like Darth Vader. When they put the CPAP on him he finally responded, disoriented to what happened and confused why everyone was fussing over him. When I got there from work he was awake, no longer feverish and apologetic for scaring everyone. He was talking and more like himself than Thursday. Visiting hours in the ICU are limited, so Mom and I left since they closed. When we got back at 12 pm when they opened, we found him unresponsive again. His arms were weak, we would talk to him and he wouldn't respond. We would shake and touch him and he wouldn't respond. I opened his eyes and he wouldn't wake up. His nurse came in a shook and shouted at him, and he woke up, looked around and feel back to sleep. His nurse thought he was just in a deep sleep. But mom and I knew that there was still something not right. We kept trying to talk to him, to see if he would stay awake and he wouldn't. We told the nurse again that he wouldn't wake up. He came and gave him another dose of the medication to reverse the narcotics. Dad hadn't had any pain medications, but he was still not responding. When they gave him the dose, he didn't wake up quickly, as he should have. It wasn't for 5 minutes that he finally woke up and wanted the mask off mad and disoriented for all the fuss. This time he stayed awake. He was able to come off the CPAP and was able to eat. This is great, because the alternative was to stick a tube down his nose to his stomach to feed him. He is now back to his usual self, making jokes and giving everyone a hard time.

He did get blood today and they are checking everywhere for an infection. He is on 4 different antibiotics and his fever is gone. He hasn't had pain medication all night since midnight and has had medications to reverse the narcotic effects. Even with all this, he is in no pain. His legs no longer hurt. Strange, yes! The original plan was to keep him in the ICU for 2 days then send him back to the floor. But since he is back to his usual self, they are thinking of sending him back to the floor, i.e. a regular room tomorrow. In the meantime he is placing his orders for breakfast, which includes sweets. It is such a relief to see him back to normal- he really had us scared.

Everything looks great as long as he is lying down.

So Dad got settled into his room. He was actually comfortable enough to have an appetite, which is much improved. He hasn't wanted to eat much lately because he has been in pain.

The neurologist came in to see him and didn't think there was anything wrong with him, of course this was while he was flat in bed. As soon as Dad tried to stand he was able to see how much pain he was in and how weak his legs were. They did ultrasounds of his legs to make sure there wasn't any clots and drew some blood on him. In the meantime he is going to be tucked in for the night until morning when they can look at all of these studies in the light of day.

A little trip to the ER and getting rehospitalized

So from my last posting, you all are aware of the swelling and pain in Dad's legs. Monday the pain was so bad that Dad actually requested to go to the hospital since none of the pain medications were working. They spent the entire night in the ER, from 11:30pm to 6AM. They did get his MRI done, and thankfully there isn't any new issues with his back. They were able to give him some IV pain medication and then sent him home.

Well Tuesday was more of the same....his legs are really hurting and swollen. He was lying down for the entire day since his legs were hurting him so bad. He tried to rest as much as he could, but with the pain, that was hard to do. They increased his pain medication dose, but that didn't make much difference. It has been frustrating, since right now Dad is a bit of a guinea pig. Let's try this.. nope didn't work, how 'bout this? Tuesday night was really bad for Dad, once again, he didn't get much rest and was in a lot of pain.

Today he went to Dr. Kazhdan's office for labs, which was very difficult to move. They still don't know what is causing the pain- it could be a blood clot in his legs, it could be because of the chemo, no one knows. When his legs are elevated the swelling goes down, when he stands, the pain returns and the swelling returns. So today he goes back to the hospital to be readmitted. We aren't sure how long he will be there, I am hoping we can get him back out in time for Christmas, but obviously we have to find out what's wrong and get him walking again. As soon as we find out more, I will let you all know.

Holiday cheer and a little numbness

Dad has been working hard each day, going to the office when the doctors appointments allow. He finished chemo last week and finally made it to the main branch. He also made the office Christmas party, or was at least able to make an appearance for around an hour. It is hard for someone who has a broken back to stand for a long period of time, or to even sit for a long period of time.

The house was decorated yesterday to get ready for the holiday cheer than will soon be descending on Dad's house. Thankfully, Tia Mary and Joe-Joe were able to help mom. The grandbaby has the stomach flu and I really don't think Dad wants to battle that in addition to everything else- although I know he is itching to see Jacob.

Today Dad went in for his regular check up and blood work. Unfortunately Dad starting to feel a little numbness in his legs, so this means another MRI for him. He was in a bit of pain when we spoke last, but they were trying to get the MRI today. The numbness might be from nerves that are compressed from his broken vertebrae or it might be a result of the chemo, since chemo can cause a pins and needle sensation. We'll let you all know when we know more.

He works hard for his money

Dad has done really well with chemo these last two weeks. Today is his last day of this round of chemo. Over the weekend Mom decided to move Dad's bed back to the bedroom, which was a little different for him since he was use to getting out of bed on a certain side. Now he is suppose to get out on the opposite side. This might have aggravated his back a little since his back was hurting him at the beginning of the week. It is better now, he just has to be very careful.

Dad went to work this week at one of the branches and was greeting customers. He was rejuvenated being back at the office. He was hoping to make it to the main branch, but that didn't pan out yesterday.

All in all, Dad is doing great. Now we are just getting ready for the holidays. Thankfully, some of our family is bringing Christmas to Dad next week. This is great since Dad isn't able to travel much with his back. We will get the house decorated and be able to celebrate with family just like the good old days.

We hope everyone is doing well, and getting all their Christmas shopping done. If anyone is wondering what Dad wants for Christmas it is to be healthy. So anyone bending Santa's ear, make sure to let him know.

Happy Holidays!!

Well, as most of you know, last week before Thanksgiving Dad narrowly avoided being readmitted to the hospital. The physical therapist had been working really hard with Dad and Tuesday he was hurting pretty bad. Wednesday, they noticed his knee was swollen again as well as his ankle. This was pretty painful for Dad, so much so that is was very time consuming and difficult for him to walk. He was so upset and depressed he was convinced he would be put back in the hospital just in time for Thanksgiving. He even told mom to have Dr. Kazhdan meet them at the hospital. Thankfully, Dr. Kazhdan was able to get in touch with Dad's primary care doctor to have a look at his knee. In his office, they were able to drain some of the fluid and give him a couple of new meds to keep the gout from causing swelling and pain. So Dad really had something to be thankful for--he was otherwise doing great and he would be able to spend Thanksgiving at home and not in some hospital room. Turkey day was great- I was at work, but Dad was able to enjoy it with Mom and some friends. It also helped that the Longhorns romped over the Aggies.

Over the weekend, Dad's knee steadily got better and better. His back still hurts some, but he was able to do his exercises again to regain some strength. Monday Dad started his new round of chemo. All of his labs are great and so everything went smoothly. They also paid a visit to the transplant hospital to drop off his records. Now that we are halfway through this 4 round cycle of chemo, Dr. Kazhdan wants for Dad to start talking to the transplant services for his bone marrow transplant. He didn't actually speak with them on Monday, it was just a paperwork visit.

Yesterday Dad met with the back specialist, who told him to stop physical therapy. At this point his bones are extremely fragile. He does have several breaks in his back, the highest being at T6. Any higher could cause problems with paralysis. Dad can't bend down, twist or make any sudden movements as this could cause another break. Sometime down the road they will look at fixing them, but that will be a while yet. They want his bones stronger, his heart fixed and his transplant done before they can do this. Because Dad's back is so fragile they recommended that he stop physical therapy. He can still continue to do leg exercises, but any back exercises are to be stopped immediately. They also do not want him walking with a cane, since it puts more stress on his back bones. Mom and Dad asked about a new brace, but the one he has affords him more mobility than the alternative. They also asked about a tingling in his thigh, which is caused by nerve compression. They can fix is, but it would require surgery that is very invasive. Instead Dad said he could live with tingling.

We had dinner with Dad last night which was good. He was in great spirits and very motivated to set some goals for himself. He plans on returning to the office soon, working from home is driving him crazy. He also wants to go back to Vegas at some point, as soon as his back is stronger and all of the heart and transplant are behind him. I think he is also hoping to make some Ferguson trips this year too.....Aruba watch out- Dad might just be on the loose!

Just call him Flash Gordon....well it was fun while it lasted anyway

So Dad has been working really hard with the physical therapist this week. He finished chemo last week and this week and has been working at getting more mobile and improving his strength. Well at the end of the week the physical therapist wanted him to start walking with a cane, or at least practicing with a cane to try to free him from the walker. They even added weights 3 lb weights to his ankles to help improve his strength. They don't want Dad to start using the cane out and about until we are really sure that he is comfortable. Well he worked and worked and worked. He tried the stairs at home, used the cane whenever he could and was hoping to be back to his old self and back in the office physically. Well that was the plan anyway. Then this morning he got up to get washed up and started to feel extreme muscle pain. So much so that he had to sit down because he was feeling lightheaded. This week they pulled off his fentanyl patch or pain patch and just wanted him to try to manage any pain with the pain pills. He had to take those and rest the day. When we talked this evening the pain seemed to be get worse almost on the verge of spasms again. They had to put the pain patch back on and had to cancel with the cardiologist because Dad was in too much pain.

Tomorrow he is suppose to go in for labs with Dr. Kazhdan, but he is dreading this since most likely she will want him to have some sort of CT scan or MRI. Dad has horrible memories of this since they are always associated with excruciating pain. He DOES NOT want another scan. We'll see how this goes and what she has to say.

Mom is feeling better, she had been sick, but is now on the road to recovery, just in time for Thanksgiving. Hopefully Dad's back will be okay for him to enjoy the holiday.

To everyone, Thank you all for your constant prayers and thoughts. Be thankful for good times with family and friends and stay healthy this holiday!

So healthy we don't know why you are here...oh except for the myeloma.

Dad has been doing wonderful. At his chemo visit last week Dr. Kazhdan told him I don't know why you are here, all of your labs are wonderful and you are the picture of health...oh except for the myeloma. All of Dad's labs are great and everyday he is getting better and better. In fact, he is getting more and more comfortable on his feet again that he forgets sometimes to use his walker and walks across the kitchen. This doesn't mean that he is 100% cured, but just the fact that he can walk short distances comfortably is wonderful.

The weekend was busy, Mom's family were finishing up visiting and then they had some friends in town to visit. It's been great to have some normalcy in the midst of all these hospital stays and doctor's visits. Monday was again chemo day. Dad was looking great, a little impatient for the long wait, but great nonetheless. He finishes this round of chemo on Thursday then it is off for a week before starting round three. Again his labs look really great and he is attempting to be the model patient. He is even trying to get permission to make some of the business trips slated for next year. Dr. Kazhdan can't make any promises, but if his back is healed and he is doing good, he hopes to make every one of them. All of the emails and calls of support help to boost his resolve to kick this thing in the butt for good. So far, so good.

Discharged home and restarting chemo

Sunday Dad was released from the hospital. It was not without drama. Dad had to prove that he could move his leg on his own, which he worked on all day Saturday both in and out of bed. Then on Sunday, his labs were all out of whack. Very different from what they were the previous day. Dr. Kazhdan was wanting for him to stay, but Dad was determined to go home. So they repeated his labs, and they were normal. So everything was set. Until his nurse came in and told him news that broke his heart. The nurse heard from the radiologist that on the last scan, they saw numerous fractures in his back, ones that we didn't know about. It takes a lot to get him down, but this was a true test. So Dr. Kazhdan came in to let him know about the results, which he already knew except that Dr. Kazhdan said there wasn't anything new. There was a new hidden fracture, but nothing to be concerned about. What is concerning is how brittle his bones are. Now that we are killing all of the myeloma cells it is leaving his bones empty and hallow. This means Dad needs to be VERY VERY careful. So with these instructions Dad was sent home just in time for Mom's birthday.

Monday started Dad's new round of chemo. All of his blood counts looked wonderful. He got his new round of chemo started without difficulty. Just in time to pick up some flowers for mom's birthday. He will go back for chemo on Thursday. In the meantime he is starting the dex and insulin again and they are making arrangements to meet with the orthopedic surgeon so see if there is anything that we can do to help his bones.

Dad is getting stronger again and more and more mobile. He is determined to be done with the walker in 1 week. Let's hope and pray.

Itching to get home and not very mobile

Thursday Dad was laughing hysterically as he recounted the story of what happened to him the night before. Let's just say he was trying to get changed by himself--he wouldn't dare ask his nurse and was having some difficulty getting changed by himself. He was laughing so hard that his back started hurting. He did have a fever Wednesday night- they think it is due to the swelling in his knee. He looked better on Thursday when we brought him lunch. They had to take him down to radiology to make sure his portacath was functioning. They thought that it might be leaking. The good news is that it isn't. Dad's WBC count is still very low, so anyone who comes to visit has to wear a mask and gloves to keep Dad safe from infections. They gave him another dose of the medication to boost his WBC production. In the meantime, Dad was trying to convince the doctor to let give him his walking papers. The only problem is that Dad hasn't been out of bed and he can't go home if he can't move.

Friday was the first time Dad worked with the physical therapist again. As we thought, it was very difficult for Dad to get up. He isn't able to to bear any weight on his knee, and with a broken back, he can't use crutches. So they tried again to get him up in the afternoon, and they were at least able to get him up three steps and back three steps. Dad said they were willing to release him on Friday- but if he can't move what good is he going to be? He realizes it will be impossible for mom to be able to move him at home if he can't help get up and move himself. So slowly he is going to have to rebuild his strength. He is hoping only a couple more days and he will be able to go home, but he isn't going to rush it. The last thing that he wants is to be rehospitalized.

Today Mom's parents are coming into town. It will be the first time that her Dad has been here and they will also get a chance to visit with Dad.

Where have we been??

Sorry, I worked on Monday and was in Dallas for business for the last two days without my laptop.

Monday:
They finally got dad's fever under control. He did get his blood transfusion because he was anemic. They also drained a good amount of fluid from his knee to check if the fluid showed an infection. Things were going good until Dad spiked another fever. We still aren't sure why.

Tuesday: So dad's fever is gone now. It looks like the reason for all the fluid in his knee is because of a sudden case of gout. One of the medications dad was taking to protect his kidneys treats this. On Friday, Dr. Kazhdan stopped it because his levels were so low. Who would have thought that two days without it would have caused this. The infectious disease doctor said that it looked like crystal formation in the fluid they removed, which is gout. So Dr. Kazhdan gave us permission to spank her.

Wednesday: Dad is still in pain from his knee. He did need another blood transfusion. He was suppose to have another scan of this kidneys today to make sure there was no damage done to the kidneys. Mom visited briefly, but she is sick now and feels horrible. She did get a shot but still doesn't feel that great so she went home to rest and not get dad sick. Dad's blood pressure is up tonight, so he was given a new medication and they are going to have to monitor it very closely tonight. Too high and it can strain his heart----VERY BAD for him. We aren't sure why its high, it could be from the pain or stress.

Tomorrow I will finally get a chance to see Dad. Will update you all again.

Great news and not great news--being rehospitalized.

So as I posted.....Dad's Friday appointment with Dr. Kazhdan had great news and not great news. All of the myeloma tests that Dr. Kazhdan ran showed a significant drop in his protein levels- the proteins caused by the myeloma. In some there was a drop of 40%, in others there as a more significant drop of close to 60%. This is wonderful news....the news we have all been praying for. Dad was suppose to start his second round of chemo on Friday, but the not great news was that his WBC count was very low. The WBC's are what fight infection, making dad very very prone to infection. Because of this Dr. Kazhdan did not start his chemo and instead gave him a medication to help boost his WBC production. Since dad was very prone to infection, we did not go trick or treating at Grandpa's--just in case Jacob had germs from school.

Saturday Dad was still feeling some pain from all of his exercises. And then of course the pain of the Longhorn's losing didn't make it any better.

I just got a call from Dad this morning. He is on his way to the hospital. He is running a fever and his knee started to swell last night. We are not sure of the cause of the swelling, it could just be from the exercises or it could be the site of the infection. Regardless, Dr. Kazhdan wants him back at the hospital for more tests and antibiotics. I expect he will be there for this next week. As soon as we get more news I will let you all know. PRAY!

Breaking news

I just talked to Dad. He said that the news from Dr. Kazhdan is that we are kicking this thing in the butt!

More details later...

Still hurting but good news??? Such a teaser!

Wednesday and Thursday were fairly benign except for the fact that Dad is still very sore and tender on his back. The physical therapist again worked him out really hard and warned him he would hurt. He is still doing his daily exercises and walking to and from the mailbox outside. Thursday he waiting for the physical therapist to show up so that he could exercise and then go vote. They waited and waited, but he was late. Instead Dad decided to do his exercises himself and while they were walking outside the physical therapist called. Since they had waited so long Dad was too tired to try and vote.

Friday starts Dad's second round of chemo. He has a 10 AM appointment, where they will repeat labs, give him his bone strengthening medication and chemo. I expect it will be a long day.

As for the teaser...Dr. Kazhdan called Dad on Thursday and said she had some good news! She wouldn't divulge the information on the phone and said she would tell us in the office when he gets his chemo. Is this the answer we have been praying for?? She did draw lots of labs on him, did they show an improvement meaning we are kicking this thing in the butt??? Don't know. Stay tuned!

Doctor's appointments, a little rest and a little avoidance

Monday Dad's morning was filled with appointments. The diabetic specialist agreed, he didn't need insulin when he wasn't on the dex. Next came Dr. Kazhdan. She said all the labs looked good and would see him again later in the week. We start Chemo again next week. Dad was suppose to have an appointment with the physical therapist in the afternoon, but his back was still hurting from the weekend visit. So he delayed this appointment for Tuesday. Instead, Dad rested his back while working in bed. Mom went to get him a different sitting chair, one that doesn't roll and has a straight back. She wasn't gone long, but Dad got lonely---he's not use to being by himself since all of this happened. Just call him the Lonely boy.

Tuesday Dad was able to get some work done. The blasted Physical therapist came back today. Dad got the lengthy workout again- was he thrilled about it, no, but he did it anyway. He did get a chance to rest his back and worked up the courage to sit in his new chair. New furniture worries him, since he isn't sure how his body will tolerate it and how easily he will be able to get in and out of it. We were hoping with a new chair he would be able to sit further back and let his legs rest a little, but he is still working on this.

The great news is his blood pressure and blood sugars have been great. Now we just need to work on his strength and his back so that he can float like a butterfly and sting like a bee! He can't wait to tell you all when he is starting to kick this thing's butt!

The blasted physical therapist

Friday's lab work was good. We also got Dad's insulin and blood pressure medication in order so that there would be no confusion over the weekend. Actually Dad doesn't have to take insulin unless it is high. Dad was suppose to have physical therapy on Friday afternoon, but since he had a long appointment with Dr. Kazhdan and an ultrasound of his legs to make sure there were no clots (there weren't!) they had to reschedule for Saturday.

Physical therapy can be beneficial and not so beneficial. Saturday morning the physical therapist came to work with Dad. They got him up and walking down the street- a first for him. All was good until the physical therapist wanted him to get into bed to work on some exercises. When they did this, Dad's foot got caught- his body twisted and he felt a huge pain in his back. I will refrain from repeating Dad's exact words- but they weren't pleasant. Dad spent a good part of the rest of the day in bed resting his back. Even with pain medication, he said it still hurt. The good thing was that Dad was able to eat a really good meal- BBQ and the Longhorns were on TV. The Texas Win was good and Dad really enjoyed it....he just didn't enjoy the exercise that we all wanted him to do afterwards.

Sunday Dad was still in a good amount of pain. He is trying to rest his back as much as possible, while still remaining mobile to prevent it from stiffening up on him. Tomorrow he has a busy day- work, appointments and physical therapy. He was napping when I called to check on him. Pray it was restful and pain free.

Blood counts, outings and spasms, Oh MY!

Sorry for the delay, I went back to work this week and got a little behind on the posts. Dad doesn't like this....he likes to make sure everyone knows how he is doing.

Wednesday Dad returned to the boutique for more blood work. This was to follow up on his dropping platelet count. The good news is that it was up. He went by the showroom---much to their surprise and was a regular man about town. The physical therapist really worked him hard....warned him he would be sore and tired and he was. Wednesday night some friends were over and everyone had a great time.

Thursday they ran some more errands. They were able to get his temporary parking permit and get some other items accomplished. All the while checking his emails, making calls for work and arranging meetings with Frank and John. Thursday he received a wonderful package from Corporate with cards, prayers and books---all from people who are keeping up with him and praying for him daily. He really was overcome with emotion when he saw this and wanted to take the opportunity to say THANK YOU! You don't know how blessed you are with all the people you have come in contact with or made an impression on until now. He was sad to hear of some others battling cancer, but also resolved to fight hard to kick this thing in the butt. I know he is planning to thank all of you personally---but we just wanted to say WOW! Thursday night Chris and I went over with Jacob (AKA the grandbaby) to have dinner with Dad. Mom had an outing with some of the girls- a much needed respite for her. She hasn't had the opportunity just to have girl talk and girl time. So she went out for a couple of hours while we had dinner. Chris grilled up some great steaks and we had veggies and roasted potatoes. Limited portions of course, but great nonetheless. Dad's sugar was good---at least until night time fell, then it was on the low side but more on that later. His blood pressure was low. I held his evening dose and we got his dosing straightened out today.
Thursday night was restless for dad. His blood sugar was on the low side, so they were checking it every few hours. Finally mom had to give him some juice and a Zinger- Dad's favorite sugary twinkie thing to get it back to normal. Now that he is off the dex, we aren't sure he still needs the insulin. The only problem is the doctors office didn't clarify this and so he is still be treated when he probably doesn't need it. Not only was the night restless because of the sugars, it was also restless because of the spasms. The physical therapist really worked him hard earlier in the week and dad was continuing to do his exercises as directed. Thursday night he spent a good amount of time standing and then sitting at the dinner table. He probably over did it and tired his overworked back too much.

Friday morning we returned to the boutique to get more labs. His platelet counts are once again lower than previously. They were contemplating adding another blood thinner since the chemo can cause clots, but since his platelets are low they aren't. His weight is good and the albumin or measure of nutrition in his blood is getting better and better. What isn't getting better is the swelling in his legs. They are really swollen, well they have been, but today they are more swollen than they ever have been. The swelling isn't just confined to the ankle, it also progresses up his legs to his thighs. This is concerning for all of us, especially Dr. Kazhdan. She ordered an ultrasound of his legs to make sure there aren't any blood clots that developed and could be causing this swelling. We also got him off his scheduled insulin, since he doesn't need it and will just check his sugars before meals and before bed. This new regimen only has him treating the high sugars. Hopefully this new regimen will avoid restless nights for mom and Dad- at least until the diabetic specialist can evaluate him and clarify everything.

This weekend should be a good one. We have family coming into town, the Longhorns are playing and the weather is beautiful.

A little chemo and a surprise visit

Sunday was a good day for Dad---other than the cowboys losing.

Monday morning was busy. Dad had an early meeting with Frank and John. Then he had Chemo at 11. The great news is that his kidney function tests are back to normal. We are very thankful for that. The bad news is that his platelet count (the part of the blood that keeps you from bleeding to death) is down. This is to be expected with his chemo regimen. Dr. Kazhdan though is nervous since he is on blood thinners and can have lots of problems. So to be sure Dad had to return today to get his blood checked again. The confusing part of Dad's regimen is the insulin he is taking. Over the weekend Dad was running really sweet, meaning his sugars were high. This is mostly due to his diet, but is also influenced by the dex on the days he is taking it. So the diabetic doctor changed his regimen and wanted him to increase his insulin doses. It is just hard for him to keep clear which insulin he is getting and when, since there are two different types, one short acting and one long acting. So today he had to get all of this clarified so that he wouldn't have any problems.

Today he went back to get his blood checked. Unfortunately his platelet count was lower than yesterday, which meant he would have to taking the revlimid for the last three days of this regimen. He also made a surprise visit to the office. Everyone was shocked to see him up and about at the office and he really enjoyed getting to see everyone and talk with everyone. He made sure everyone knew that they could visit him--especially since his pain is gone when he talks about work. He said the office looked sharp and was so glad to get a chance to visit. He will still be working from home for now until his mobility is a little more improved.

Lots of IV fluids and the best day he's had in a while

Friday afternoon was dad's routine chemo day. Dad was feeling pretty good and his blood pressure was great without any medication. Unfortunately, when they checked his labs his kidney function tests were really elevated. This is probably due to the low blood pressure he had over the last day. So this meant IV fluids, a LOT of IV fluids. They got to the boutique around 1:20 or so and weren't able to leave until after 6 pm. With Dad's chemo he routinely gets IV fluids, but since his kidney tests were high, he needed a lot more. Dr. Kazhdan was concerned that his blood pressure might be low because of his blood pressure medications, but also the combination of pain medications he is getting. There are times when he sounds really sleepy, because of the pain medications. So she cut the patch dose in half and wants him to try to decrease the anxiety medication.

Saturday was a great day! Dad felt great, he said it was the best day he's had in a long time. The pain patch dose was cut in half, and rather than getting the anxiety medication 3 times a day, he only got it last night. He was feeling really good, the Longhorns beat Missouri and all was right with the world. Watching him walk, he is moving much better. Physical therapy will still come to work with him next week and he will have chemo again on Monday.

Long awaited outing and Under pressure

Wednesday morning was an adjustment for Mom and Dad. With Dad's back and his slower mobility, he needs help getting dressed and getting washed up. Mom understood this and was trying to get dad up and showered early, since he had an 0830 doctors appointment. No one told dad though.....he was insistent on checking his work email and sending out some emails thinking he had plenty of time to get ready. He is use to jumping in the shower and being ready to go in 15 minutes. Well....it takes a little longer than that now. So they were a little late for the doctors appointment. Everything went well, all of his labs were great and he was moving really well. After this we went to lunch and they went to find a chair like the one that is at the boutique. For a man that was cooped up in a hospital for 2 weeks, this was a long day. Wednesday night was good- just trying to make sure all of his medications are correct and that he is taking them at the same time. He slept really well on Wednesday- Mom and Rocky didn't even wake him when they got up to let Rocky out in the middle of the night.

Thursday morning was a repeat of Wednesday. Dad was once again sending emails, and had delayed getting up and out of bed so long that he didn't have time to eat breakfast before the home health nurse arrived. She was there to get a brief history on Dad and determine what type of physical therapy he would need and how many visits. Everything was going great---he had his medications, his breakfast and was telling her his life story. That is everything was great until she checked his blood pressure. It was LOW, really LOW! So we checked it standing and then immediately called Dr. Kazhdan to tell her. She was so concerned she wanted to call an ambulance to take him to her office. Dad refused this and wasn't thrilled about having to go to the office since he had a work meeting scheduled for that afternoon. So we all piled into the truck and off we went to the boutique. He said he was feeling fine, until they went to sit him down to check his blood pressure. The chair he went to sit in was on wheels and wasn't flush against the wall. When he went to sit back- it moved so he moved a little quicker than he needs to and cause a good amount of pain to shoot through his back. He was really pale and looked as though he was going to faint. So we all wheeled him into the infusion room so that he could get IV fluids. He had to reschedule his meeting and talk with John by phone instead---which he wasn't happy about. We think the reason his blood pressure was so low was because of the new blood pressure medication they added when he was in the hospital. Instead of two meds, one in the morning and one at night, he was now taking 3 meds. So she stopped the new medication and sent him home on his merry way. They had a good dinner and were going to play some cards until he said "I feel groovy." Mom said the same look came on his face as it was when he was about to pass out. She immediately checked his blood pressure and it was low, LOWER thank it was in the morning when he needed IV fluids. She calls me so that I can head over to the house. In the meantime, they are rechecking it and checking their own blood pressures hoping the machine isn't working right. Unfortunately it was. When I got there it wasn't any better. Dad didn't want to call Dr. Kazhdan, since he knew her reaction would be to send him to the ER by ambulance and put him in the hospital. Sure enough, that's what she wanted. Dad was able to convince her though that he was fine, no dizziness, shortness of breath or chest pain. She reluctantly agreed to have him lie down and check his pressure again lying flat. If it was better he could stay home, if not he had to go to the hospital. The good news is that is was better. Mom checked it several times in the middle of the night and it kept getting better. Even though Dr. Kazhdan had stopped one of the medications, his blood pressure was still on the low side of normal. So when he had his evening dose, it got lower. This morning he didn't take any blood pressure medications and they are going to talk with his cardiologist to see what medications he wants him on and what doses. It's possible dad doesn't need this much while he is off steroids and only needs it when the steroids are in his system. Not only do steroids increase your blood sugar, they also increase your blood pressure as well.

So, Dad narrowly avoided another hospitalization and is feeling much better this morning. We all are. Mom's blood pressure is better, and so is mine! We were both up with the anxiety of it all and Dad's is back to normal. Physical therapy is working with him this morning. We'll see how that goes!

There's no place like home....

Dad was finally released at 4 pm today. There was a delay in getting his home health physical therapy set up. Every company they tried weren't accepting his insurance, so it was getting passed onto a new company. They finally found a company that accepted his insurance and everything was set to go home.

Dad got into his truck without any problems. Those practice drills on the stairs with the physical therapist helped a lot. He was able to get in and out without any problems. I cooked a nice dinner and we were able to enjoy and take thanks for having good food with family. Dad even got to enjoy some reduced sugar dessert and sugar free ice cream.

We worked on a schedule for all of his medications---and let me tell you there are a lot of them. Tomorrow he has an early meeting with Dr. Kazhdan---more blood work. At some point physical therapy will be getting in contact with Dad to make arrangements.

We thank everyone who was praying, visited, sent warm wishes and prayers. The last two weeks were certainly unexpected, but everyone has been so supportive that it has helped us all get through this.

Good to go around 1 pm.....

Dad did a lot of walking yesterday. Dad practiced with the stairs, to make sure getting in and out of the truck would be easy. He walked in the morning and again at night. We want to make sure Dad is really good at walking before we go. Dad had one spasm or twinge last night, as he was repositioning himself in bed.

Dad is doing well this morning. The cardiologist has already been in, Dr. Kazhdan has already been by. Now we are just waiting for the internal medicine doc to give him his walking papers. We think this will be around 1 pm.

In the meantime, Dad is getting cleaned up, getting ready to walk and Tommy Bahama is crying in the closet for lack of use. "Don't you love me anymore?? Why do you keep wearing those hospital gowns?" Well Tommy Bahama get ready.....the boy is back!

A message from Dad

Just wanted to tell all of you:

It would seem that prayers do get answered and that I am feeling better. My strength is improving everyday. God willing I will be out of here on Tuesday to continue to fight the battle against the resident evil (cue Darth Vader music).... multiple myeloma. Your continued prayers and support are greatly appreciated and I am in continual contact with my staff and we are working to get us to the next level. Now if you don't mind.....time to get back to work.

Love,
Coach

The Marathon Man

Sunday was a surprising marathon day for Dad. By the time Mom got to the hospital, Dad had already been up and walking with the physical therapist. When Mom got to the hospital, she was expecting to see Dad in bed, where he always is ready to get started and cleaned up. When she walked in, he wasn't in bed. A slight panic set in until she saw him staring at her from the chair. Dad walked a marathon in the halls. He walked up and around the floor three times---or according to dad 500 feet. And he did it without pain medication!! He still has the pain patch on his chest, but he didn't have his extra pain medication.

He sat up and watched the Cowboys---of course he was grumpy since they lost. When he is back in bed, he works on his leg exercises, so they actually look more muscular today than they have in the last week.

Sunday night he had two small muscle spasms. He was a little surprised since he hasn't had any spasms in several days, but he also has had any oral pain medication in the last two days and has been doing a lot of walking. He isn't really sure if they are "spasms" or if it is just a reminder twinge of what he is missing. Either way, he wasn't thrilled they came back, it seems to be more bothersome on the right than the left. This morning he was working on stretching out his back and concentrating more on the right since that is where the twinges were more recurrent.

He will get his second dose of chemo on Monday, then they will draw labs on Tuesday and send him home.

Hook 'Em Horns and 400 paces

Dad did really well today. The physical therapist got him up without his pain medication, he walked the halls for around 400 paces and sat up to watch the Longhorns beat OU!!! He stayed in the chair for the whole game, ate lunch and walked again before he got back in bed and took a nap. He actually didn't have any extra pain medication all day until it was time for bed. This is great for him! His back is tired/sore, but not in pain.

All of his labs look great, he didn't need any extra IV fluids. He took a long nap this afternoon after his workout and excitement of watching the Longhorn victory. And Sharyn---Thanks for praying for the Horns!!! :) Anytime the Longhorns win it helps boost Dad's spirits.

It sounds like he will get his second dose of chemo on Monday in the hospital and then possibly go home Monday or Tuesday. His bed at home is all ready for him, waiting. We are working on getting him a lift chair like the ones they have at the boutique. They fully recline, have massage and heat and lift to standing. This will help Dad while his back in healing, plus they are really comfortable for him to sit in. Now we just need to find him a tray to act as his temporary desk for his work stuff for when he works from home. It will take some time to rebuild his strength and he is itching to get back into the office with his troops. One of the guys at work is kind enough to let him use his office on the first floor so that he won't have to climb the stairs to get to his office. Stairs are difficult for him right now, actually I don't think he has tried stairs--to taxing on the back muscles. Instead he will work from home or out of the first floor office until he is back in fighting condition.

He has a routine of exercises he is suppose to do daily that the physical therapist wants him to do. These exercises will help his muscles regain their strength. Staying in bed for so long really weakens your muscles.

Thanks again for everyone who thinks and prays for Dad!!

Starting Chemo...

Today Dad was really encouraged to walk and exercise as much as possible. He spent the morning working, returning emails, making calls and talking with Frank. He talks with Frank on a daily basis and met with him and John the other day when he was readmitted. We were trying to get him up and out of bed when he started his calls again this morning. We think he was procrastinating the inevitable of exercise. But we got him upright to put on his back brace without much pain. We also got him up to walk with a little help, but his legs look stronger today than they did yesterday. He did a lot of walking in his room, and then returned to the chair to sit up. Mom and I went for lunch as he returned some more calls while sitting and working his legs. He had a good lunch sitting up, was able to walk to the bathroom a little more steadily than before and then returned to bed. We had a nice visit with his sister and bother in law.

He finally got the first doses of this second round of chemo. We are encouraged since the response rate with this regimen is 98%. Dr. Virlar came and told him to eat eat eat. His albumin levels are low, which is a measure of his nutrition and that allows for swelling and fluid to collect in different areas of his body. This is why is he having pain in his groin. So he had a great lunch, had some healthy and not as healthy snacks this afternoon and then will have a great steak dinner. Protein is really important to help his body heal and get as healthy as possible while he is fighting chemo.

We hope he will be discharged over the weekend, but it may be Monday. In the meantime, the home health agencies are working hard to get all of the equipment he will need at home to function and he has set up his hospital room as his home away from home and temporary office. I set him up with access to post his own responses and blogs, so this evening he will be able to tell you all personally how much he appreciates all the well wishes everyone has bestowed on him.

Everyone keep strong in faith for Dad's speedy recover and the Longhorns to win over OU! Hook Em!!!

Grin and bear it....

Sorry about the delay in posting info for what happened on Thursday- stayed at the hospital after working and then passed out when I got home.

Thursday Dad was a little more motivated to get up and out of bed. It has been frustrating for Mom to see him get so worked up and anxious about the possibility of pain and muscle spasms. So Thursday Dad decided to really work with physical therapy. He got up and walked and sat in a chair for a while before he got tired from not using his muscles. He also walked again in the afternoon. The problem is that the longer he goes without using his muscles the weaker his legs get. Dr. Virlar, his internal medicine doctor was here watching him walk from the bathroom and was able to see how anxious he gets about trying to get back into bed. He had a good talk with dad about moving quickly and just trying to grin and bear it or suck it up. He told him that we would never be able to get him totally free of pain, but we can manage it to be bearable---almost a dull ache. He is giving dad some new medications for anxiety and Dad was more motivated than ever to really work at moving quicker and trying not to let his mind and worry get the better of him.

The revilimid arrived yesterday. They were suppose to start his chemo yesterday, but by the time they gave him his IV fluids, it was almost 11pm. They decided to wait until Friday to start. This means he will be on a Monday/Friday chemo schedule this time.

The neurologist came to see dad again- since he was feeling a lot of pain in his spine and his groin. The good news is that there is no nerve damage. The only thing is that his leg muscles and hip flexors are weak---but we already knew that.

Thank you so much again for everything. I'm going to show dad how to post on this blog so that he can have the opportunity to address all of you.

The raising of the white flag...

So Dad surrendered yesterday. He agreed to be readmitted to the hospital last night. As I told you all yesterday, Dr. Kazhdan, Elizabeth his nurse and Mom were pleading with him to be readmitted to the hospital. After waiting at the oncologist's office for several hours, getting IV dexamethasone and IV pain meds he finally agreed. Last night the ambulance picked him up and transported him back to the hospital.

The CT scan didn't show any changes which is good. Dad thought he injured himself when he tried to get up. There were no new fractures or any new swelling. Now they are working on getting him back under control with his pain management and physical therapy. The big problem now is that he is scared to get up because he might hurt himself. The anxiety of this is going to be an issue to work through so that he can build his strength and stamina as well as strengthen his bones. They finally got the bed that he will need temporarily at home while he is healing and are working on getting a lift chair to help him get up and recline fully. These are the types of chairs they have at his oncologist's office and he loves them. They have heat, massage, fully recline and lift the occupant to standing without pain.

Tomorrow dad will get his first dose of this new round of chemo. We aren't sure when he will be discharged home again. We are working getting physical therapy set up for him when he goes home. This is difficult with his insurance. Most of the companies in town don't accept his insurance.

We'll see how things go and what we need to plan next.

The trip home may be shortlived

Dad was discharged yesterday evening. He worked with physical therapy, they showed him how to move out of bed without bedrails and logroll to his side. Last night was okay, they took off his patch around midnight.

Today was a different story. He had an oncology appointment today at 1pm. Trying to get out of bed this morning though, he moved wrong and caused the muscle spasms to return. They worked for a while trying to get him out of bed. Mom called and didn't think they were going to make it to the appointment. They finally made it there after struggling to get out of the car and sitting in the front office for a long period of time. Several hours later, they finally moved him back to the infusion room where the therapy chairs are located. Mom, Elizabeth and Dr. Kahzdan were pleading with him to call an ambulance to send him back to the hospital but he is refusing. We are working to get a physical therapy company that will take his insurance. They gave Dad is IV dexamethasone and are waiting it out. We are very concerned because Mom may not be able to help him at home.

"You gave me a mountain this time.." and "In the arms of an angel"

As most of you know this last week Dad has been trying to occupy his time watching concert DVDs. We watched Elvis Lives, the 25 yr special that combined his image and voice from past concerts with his band members still living playing live for him. It was a great concert. There was one song that was particularly touching to Dad and very fitting. The song was "You gave me a mountain" and the chorus goes as follows:
But this time, lord you gave me a mountain
A mountain you know I may never climb
It isn't just a hill any longer
You gave me a mountain this time

Then we watch the Carlos Santana concert he performed with Sarah McLachlan in her song "Angel." Some of you may remember it from City of Angels with Meg Ryan and Nicholas Cage.
In the arms of an angel
Fly away from here
From this dark cold hotel room
And the endlessness that you fear
You are pulled from the wreckage
Of your silent reverie
You're in the arms of the angel
May you find some comfort here

Dad has had a lot of time to reflect on the things he has seen and the music he has heard. Friday was a particularly rough day. It started great, a few twinges when would move, but nothing horrible. He decided it was time to get up to walk and go to the bathroom. In order to walk he needs his back brace and in order to get into it he has to be flat. This was very rough for him. Every time we moved a little flatter, his back would spasm. Anytime he would cough or hiccup, he would spasm, thinking about these songs would make his back spasm from the emotion of them. We tried for an hour to get him into his brace and had to stop. The spasms weren't getting any better, and the pain was getting worse. Dr. Kazhdan called the neurologist and a pain specialist to see him. Instead he had to content himself with staying in bed and trying to stay positive. Friday was a rough day to stay positive for any of us. He was very disappointed knowing he would have to stay the weekend and was even more upset when he couldn't get into his brace.

Saturday was a miracle. The pain specialist had come by and given him a patch for pain as well as a couple of patches on his back for pain. This combined with all the new medications he had allowed him to get into his brace pain free and WALK! He walked the length of his rather large room 10 times upright and pain free. He did use the walker for support, but this will only be temporary to rebuild his strength and heal his bones. He actually decided to show off and walk figure 8's. He was so happy and we were all overcome with emotion. He had Andrea Bocelli in the background to help motivate him. His student nurse told me that listening to him must be what it is like to hear God sing. I think God was listening to all of our prayers and we are all so happy. He visited with Roger and Eric who came to visit. He also got up again in the evening and was able to help get himself cleaned up.

Sunday has also been great. He got up again this morning and walked. He said his back doesn't hurt him at all and the brace didn't hurt either. Just so that you all understand how fragile his bones are.....he has a new rib fracture from using the brace. The first day Mom tightened the brace as she was told and when it was released it caused his fragile rib to break.

Monday morning at 815 he will get his portacath placed. He won't be able to eat anything after midnight, but the procedure doesn't take long. Around 15 minutes. Then he will be able to eat. If they will release him Monday, we aren't sure. We hope, but it may be Tuesday. Dad will need physical therapy after he gets home. They might come to the house, or he may have to go to rehab. He will probably need the walker until his strength is regained and he will need to take it easy as he gets ready to start his intensive chemo treatment.

THANK YOU ALL FOR YOUR PRAYERS!!! All of the cards, calls, emails and prayers are so appreciated.

The Bionic Man

Dad's back brace arrived today. It is a rather large contraption, has a huge back support covering all of his middle and lower back and a front support that even has a T piece that rests just below his neck. He has to wear this ANYTIME he is out of bed. So they fitted him with it and asked him to walk.....no big deal right? WRONG! Laying in bed for two days really changes your strength and especially with the fractures in his back, nothing feels right. He was able to take 3 steps forwards and backwards, but then started to have a lot of pain and muscle spasms. Later the physical therapist worked with him again, but it was so much pain and spasming that they got him back in bed and took the brace off. When they did, his back locked on him and they noticed a lump in his back. This prompted another CT scan---the good news is there wasn't any bleeding or changes noted. Swelling yes, but nothing else. This swelling is most likely from him laying in bed for the last two days. They said they were going to increase his muscle relaxant dose and try to treat him with pain medications. What this means for him going home we aren't sure. He really can't move, so how can we expect him to get home?

Not much else to report. Just a waiting game....

Return of the jokester

What a difference 48 hrs makes. Dad was put on strict bedrest until he gets his back brace. So no getting up out of bed to go to the bathroom or shower. We were able to get him shaved and cleaned up this morning, smelling good with his cologne and listening to Andrea Bocelli on DVD. Since they got the PICC line in he no longer needed his IV they started yesterday morning. His student nurse took it out this morning, held pressure briefly- but forgot he was on blood thinners and needed the pressure a lot longer. Let's just say there was a big mess involved.

So this morning his oncologist came to see him--her first question is always "So....how are you today?" He decided to freak her out by saying he was bleeding to death. She freaked out and started asking all sorts of questions. Dad was just giving his student nurse a hard time because of the IV incident. You know that when he starts joking with you he is feeling good.

We watched concerts all day- started with Andrea Bocelli, moved on to Willie Nelson, then MTV unplugged, Elvis and Texas Tornadoes. It made the day really great- Dad loves to listen to music and it made the day go by quicker.

Not as many doctors today. The neurologist- brain and nerve specialist came by and agreed with the neurosurgeon. He doesn't feel that Dad needs surgery. He also, doesn't think that Dad had bleeding around his spinal cord. He did a thorough exam on his nerves in his legs and lower extremities- everything seems good. He feels that they should aggressively treat his myeloma and get his bones really strong. He is worried that his bones are not strong enough to take the cement or the pins.

So far it doesn't look like there is an infection- that's great.

They advanced his diet. We got him a turkey sandwich today which he loved.

They are hoping to get his brace soon so that he can get up and walk. If everything looks good and there is no infection- he will get his special portacath- a port under his skin that will allow him to get his chemo and blood draws and then hopefully he will be released home this weekend.

Thanks again for all the prayers and support.

Two cutters that can't agree....

Thank you all that have sent cards, emails and posted prayers. It helps us all bolster our spirits and strength and Dad is so grateful to everyone.

Sorry for the brief post- I tried to hit the highlights before I passed out.

The back- two compression fractures at T12 and L2. This is right in his mid to lower back, right where his pain has been. He is still in pain, despite the pain medications and muscle relaxants. This is to be expected since he has two broken bones in his spine. The remaining bones are intact, but very weak from the myeloma. They can fix these bones by injecting a resin that turns into cement into the bone itself. Or that was the plan until today. But more on that later.

The infection: no more fever. So far, no cultures are showing any infection. He is still on two antibiotics plus an anti-fungal medication just in case. What his oncologist is thinking is that the fractures could have caused the fever and there might not be an infection. Still, just to be safe, he will stay on the antibiotics for now.

The lungs: he is still on oxygen. When he is off oxygen his oxygen levels in his blood are too low. This is because he has areas of his lung that are collapsed from not breathing deeply and lying in one position too long. He went for a CT scan today and it show these collapsed areas, but nothing else that was concerning. His lung specialist finally came last night at 10PM, mom and I had already left and Dad doesn't remember what he said with all the meds. Now he is on breathing treatments and some lung exercises by deep breathing every hour.

His appetite: He woke up this morning hungry. He no longer looks like he's 9 months pregnant and his belly is starting to talk again. He started with some broth and jello and is now on cream based soups and applesauce and puddings. Tomorrow he might be back up to a bland diet. He really wants a tuna sandwich from Earl of Sandwich, but will have to settle for pudding.

The new pain last night: As dad was trying to get up he noticed a new pain spring up in his leg and groin. This was a pain the back specialist had asked about, that sprung up as he was trying to get up. I spoke with his oncologist and she was very concerned that there might be some compression on his spinal cord causing him to have this pain and trouble going to the bathroom. This is very dangerous since this can cause severe nerve damage and even paralysis. He got steroids last night---which really helped. He was able to get up and walk to the bathroom. Today he went for another MRI and it did some bleeding that probably happened with the fracture. Since he is on blood thinners for his heart, this means that the bleeding just keeps getting worse and compresses his spinal cord. There was also a slight shift in the L2 vertebra into the spinal cord. This is where the two cutters can't agree. The back surgeon specialist says he can fix T12 with the resin/cement and for L2, he would need to make an incision and relieve the compression on the cord and fix the bone with the resin and reinforce it with a rod and pins. In order to do this he has to be off the Plavix so that there isn't any bleeding near his spinal cord. The plavix won't be out of his system until probably Tuesday of next week, maybe a little earlier or later depending on his labs. Now the new doctor, a neurosurgeon comes in to give his opinion. He specializes in surgery on the nerves, brain and spinal cord. He doesn't think dad needs surgery. He wants to just keep treating him with the muscle relaxant that don't work. This is the funny part, because you would think cutters (i.e. surgeons) recommend surgery and these two cutters are completely polar opposites in their recommendations. Tomorrow a new specialist on the brain and nerves will come and give his opinion. In the meantime, he will still get the steroids until something is decided. This means insulin again if needed.

Dad's anemia: Dad's pretty anemic now with all the blood draws, plus the bleeding from the fracture. Today he got a blood transfusion so he's nice and pink.


Dad's heart: Because dad's myeloma is so bad right now, they are thinking they may have to delay his bypass and start his aggressive treatment first. We still aren't sure about this, but it is looking like he won't have bypass next week.

How much longer: Dad will stay in the hospital probably until next week when they fix his back. They haven't said for sure one way or another, but they are watching his back very closely.

No more poking: I asked today about getting a special type of IV placed in Dad called a PICC line. This is a long catheter that stays much longer than his regular IVs. This line they will be able to draw blood from and give him several IV medications and blood transfusions all at once. This is good since, they had to restart his IV three times in the last two days and they haven't always been able to get it on the first stick.


Dad has become part of so many part of people's prayer circles. Thank you all. Will post more tomorrow.

Oh, in case you haven't keep count---Dad now has 14 different doctors. Crazy huh?

Dad's Hospital stay

Just a quick note to update you all. I will write more later, but I have been up at the hospital for 36 hrs + with work and Dad and I am really tired.

The MRI showed two compression fractures of his vertebrae---this is from the myeloma weakening his spine. His spine is in bad shape, very weak and very prone to breaking. There is also a weakening of another vertebra. These fractures are causing the back pain and spasms. Now we know the cause

Dad hasn't been drinking or eating. He is getting IV fluids to stay hydrated.

Dad woke with a fever this morning and had some vomiting. We think there might be an infection somewhere. They sent blood and urine to check for infection and started him on antibiotics.

Dad is also having a hard time breathing because of the pain and his belly is swollen making it difficult to breath. He is on oxygen to help keep his oxygen levels up in his blood.

It looks like he will be in the hospital for the next several days. He is on heavy pain medications and is snowed most of the time or in pain. He really can't talk much to anyone and hasn't been able to answer calls.

Lots of new doctors coming to look at him---a back specialist, infectious disease specialist, a new internal medicine doctor, lung specialist plus physical therapy.

I know everyone is anxious for more news. I promise I will write more tomorrow. Keep praying.

Willing to try anything and a visit to the hospital

Over the last several days Dad has been in a lot of back pain and spasming. The pain medications and muscle relaxants aren't working for him so he got to the point that he was willing to try anything, including acupuncture.

Dad had his first visit with the acupuncturist on Thursday. He wasn't impressed. She did place some needles in his back and his ear and used a technique called cupping to draw out the toxins from his muscles that were causing the back pains. The cupping caused lots of bruising and left marks on his back. He was actually laughing afterwards, saying his back felt good, but he might as well have seen a witch doctor for what he was going through. Friday he wasn't miraculously healed, which I think he was really hoping for. Friday was a bad day- busy at work and in a lot of pain. Saturday was the second session for acupuncture. So willing to give it a second chance, he went. Fortunately for him he had a muscle spasm on the table. A whole lot of pain and several more needles later he was still barely able to move. That put an end to his trial of acupuncture.

Saturday night was bad and Sunday morning wasn't any better. Still in so much pain and barely able to move, Dad talked with Dr. Kazhdan and agreed to go to the hospital to get some pain control so that he could have a repeat MRI. Luckily, it happened to be the hospital I was working at so I was able to see him briefly. The ER doctor and the doctor managing his care in the hospital are very concerned for an area of swelling on his back. It could be from the cupping or could be bleeding under the surface deep in the muscle from an acupuncture needle. Because he is on blood thinners, if a blood vessel were nicked- it could still be bleeding, compressing the adjacent nerve and causing muscle spasms. They finally got his pain under control- this way he can get the MRI tonight. The MRI will tell us if there is bleeding or if it is compression to the nerves from his weakened back bones. His bones are very weak --at least from what they could see on the XRay.

Every cloud has to have a silver lining right? On the brighter side, Dad's renal function tests are much better and his WBC count in back up to the low side of normal. I talked with Dr. Kazhdan today and she is very excited about this. It could have been the antiviral medication that was causing the problem with his kidneys. The worrisome part of this situation is what will happen when he has his intensive treatment after his bypass. Time will tell.

I know everyone is praying and keeping my Dad in their daily thoughts, but please say a prayer for him tonight. He will stay overnight in the hospital until they can figure out what is the matter with his back. Pray for strong bones, a strong heart and a strong will to beat this terrible disease.

No significant response

The last few days Dad has been into work to finish up year end operations. He travels in with his heating pad, stays as long as he can tolerate the discomfort. He has still been having back spasms at night making them restless and making his routine activities like reaching for something on the floor a challenge. He can't bend at the waist to reach, he has to get down on a knee. I keep telling him bending isn't good body mechanics, but I think the whole idea of kneeling still bothers him.

Today he met with Dr. Kazjdan. You can really tell that he has lost weight. Today his pants were really loose and baggy. Mom says he doesn't want to eat dinner, he just isn't hungry for anything. This is worrisome since he has to keep up his strength and energy to help his body best fight the cancer. Dr. Kazhdan thinks the reason his back is spasming because his cardiologist started him back on his cholesterol medication. That type of medication can cause muscle spasms and when he stopped taking it earlier his back spasms stopped. He restarted it on Friday of last week and Sunday his muscle spasms were back. So today he will stop taking it and see if it helps. If so then we know it is this that is causing the problem.

The kidney specialist felt that his kidney function tests were higher than normal not because of the myeloma but because of the antibiotic he was taking as a precaution to prevent infection while he was undergoing his velcade treatment.

What is disappointing is that the tests show that after the first round of treatment, there wasn't the dramatic response we were hoping for. His protein level is still elevated, although slightly better than before. Depending on who you talk to this may or may not be a problem for his bypass. Some feel his level is fine for surgery, others feel it is still too high. The question becomes do we wait for bypass until his labs look better and risk his heart, or do we go through with it. The answer is we go through with it. Once his heart is fixed we can really focus on this cancer therapy. And since he didn't have a great response to the initial round, his therapy will really need to be intensive. Depending on how he does after his bypass with the revlimid, they may change the therapy to something else.

What was also concerning was his white blood cell (WBC) count. Remember early I mentioned that chemo can suppress the formation of all of your blood cells, including those that help fight infection like white blood cells. Today Dad's WBCs were low, much lower than they had been. This is worrisome since he is at risk for infection. This may be due to the chemo that he had, although that was several weeks ago. The other thing that could be causing this is the antiviral medication can also cause his WBCs to fall as well. So today he will stop taking this medication as well.

As for the pain, Dad is to the point that he is willing to try anything, including acupuncture. He really wants to get an adjustment from a chiropracter, but that idea was nixed by Dr. Kazhdan. I have the name of an acupuncturist and we will see. Hopefully he won't come out looking like a soaker hose.

As for fluids, they were planning to start his bone strengthener today, which is given by IV. This medication can damage his kidneys, so he was suppose to get IV fluids today. Elizabeth tried, I'm not sure how many times and was not successful. Then she called upon me. I was really worried about this, I was hoping and praying that I wouldn't have to poke him again. I even told mom "please don't make me stick him." And just like I thought, it wasn't successful. I tried 3 times, but each time was no luck. Elizabeth tried again twice after this, but no luck. So Dr. Kazhdan opted not to start the medication until he gets his portacath which will be put in when he has surgery. This is an access port to his blood vessels that allow them to draw blood from and given medications and fluids through without having to poke him every time. Now we are just worried his vessels will be ready for the surgery.

Please keep praying, we were all hoping for a better response than what we got with this first round.

A rough few days

This weekend brought back the pain in Dad's back. Over the last week his back has been tiring towards the end of the day. Saturday he visited with my aunt and uncle, but Sunday started to bring back the muscle spasms. He napped for a while during the day while he could, but then his back started to become more and more uncomfortable. Sunday night, he had more muscle spasms making it a difficult night to sleep.

When we talked this morning he sounded tired and a little frustrated. We were all hoping his back problems were behind him (no pun intended). But now they seem to be starting again. So last night he ate pickles, took his pain medication and muscle relaxants and still had a difficult night.

Today he visited with the kidney specialist. They drew more blood work and told him they would call him with the results. He had a conference call this afternoon, which luckily he can do from home. It is becoming difficult for him to get comfortable and move. His next appointment is on Wednesday- so we will see what Dr. Kazhdan has to say.

Wednesday/Thursday and Friday

Wednesday was an ordinary day for Dad. We talked briefly, mainly about movies. Chris and I went to watch a movie for his birthday and I needed the professional opinion (AKA Dad).

Thursday he had an office visit with his cardiologist. This was a followup visit to see what medication regimen they wanted him to be on. Dr. Kazhdan took him off the cholesterol medication, thinking it was contributing to the muscle spasms. They are needing to check with the surgeon that will do his bypass to see which medications he is comfortable with him skipping. He tried to get into see the surgeon as well, but wasn't able to get squeezed in. He was suppose to see Dr. Kazhdan next week but since he was already missing work, decided to see if she could squeeze him in as well. His labs all look good, well stable anyway. The MRI they did a few weeks ago did show some weakening of his vertebrae, so she wasn't to repeat the MRI for verification. She also asked a nephrologist or kidney specialist to review his ultrasound of this kidneys and give her opinion. The only thing is that she failed to tell him about this before calling the office. So Dad gets a phone call from the nephrologist's office asking to set up an appointment, completely catching him off guard. The last time they did this they told him he had cancer, so needless to say he wasn't thrilled to be getting this call. When he asked Dr. Kazhdan, she apologized and just told him she wanted to get their opinion and approval for surgery in October. The only thing else that is pending is the results from his jaw XRays. Once they have those they will get him started on a medication to help strengthen his bones.

Friday morning was the same for Dad. He was already at work when I talked to him this morning. Said he was feeling okay---and said he wasn't fibbing! Will keep you all posted.

Monday and Tuesday

Dad's back has still be getting tired in the afternoon. Monday wasn't bad, just the usual late afternoon, been up all day soreness and stiffness. He was fairly busy at work, so I think that also made him a little tired.

Today Dad sounded good, but his back is still stiff at the end of the day and slightly tender. Now that he is healing, we can hopefully start some strength training exercises for his back. These will really help him, especially if the myeloma gets worse and attacks his vertebra (his back bones). Exercise is the best thing for him, it helps his bones stay strong which is what we are really wanting right now.

His replacement Rock Band guitar should be arriving this week....that should be fun and some exercise. For those of you who have never played....just spend a few minutes on the drums and see how your arms, legs and back feel! :)

ROCK ON!

Saturday and Sunday

So....apparently Dad has been a big fat liar! Well, sort of anyway. Since he has been good this week I didn't see him until today. He seemed a little stiff when trying to hold Jacob. Apparently his back has been hurting him since Wednesday of this week. He overexerted himself while playing drums on Rock Band and since then his back has been hurting. Plus he is a little tired from the week and the late night he had Friday. This doesn't make his back any better. He is taking his pain medication and muscle relaxants, but getting up out of bed is becoming tricky again. I guess this might put an end to his drumming days....or at least put them on hold while his back heals. He will just have to settle for playing guitar or singing instead.

He was able to visit with Grandma this week. She was in town while her nursing home was evacuated for Ike. He also saw his cousin this weekend too.....Just a regular family reunion. I did tell him that I would let you all know his back is bothering him. I don't think he really wanted me to, but just for you all to know to keep praying.

Thursday and Friday

Thursday turned out to be a lab draw appointment. The good news is that Dad's labs continue to look good and he got away without IV fluids again. Thursday was a long day for Dad. He had an early doctor's appointment followed by a long day at work. These days are tiring for him, so he had a long nap on Thursday when he got home.

Friday was also a great day for Dad. His back's not bothering him and he worked during the day. I spoke with him briefly this evening but had to go since I am at work.

His bypass is tentatively scheduled for October 10th- if all of his labs look good this will be the day. If not then they will delay it. Hopefully everything will look great and we fix his heart and then focus on the cancer.

For those along the gulf--stay safe, stay dry.

Wednesday

This morning when I spoke with dad I heard something I had not heard in a long time--joy and silliness. Dad was in such a good mood, partly because he has been at work all week, and also because his back is not bothering him. He did not have any twinges or spasms last night, so he actually getting to sleep.

Work has been great for Dad. They are getting ready to open a new store. The new location and promise for great business really helps him boost his morale as well. Where some people go to work for the sake of earning a living, Dad goes to work because he loves what he does. So when he can't be at work for reasons like doctors appointments or back pain he is truly miserable.

Tomorrow is Dad's next doctor's appointment, we are hoping all will be well, and hopefully he won't need any IV fluids. Keep the prayers coming. For those of the family who are down south in the path of Ike, we are praying for you. Please know if you need anything, or need a place to stay, you are always welcome. I will let you know how things go tomorrow.

Monday and Tuesday

Sorry for the delay, I have been at work the last few days and didn't get a chance to update the blog yesterday.

Thanks to all of you who were praying for no IV fluids
Sunday night was a great night for Dad. The muscle relaxants are working really well for him, he has small twinges and soreness, but no actual spasms.
Monday morning he had an early 6AM meeting at work, then on to the boutique for labs and possible fluids. The good news is that his kidney function looked good, or at least stable at what it was previously. This meant no IV fluids needed!!! Dad was able to go back to work and actually be productive. He did say that is was a long day since he started so early and that his back gets tired around mid afternoon, but no spasms. I did tease him that he forgot to take pickles and pickle juice with him to work.

He slept really well Monday night. Had his few twinges, but again, no spasms. He is now trying to recuperate and heal. Tuesday was also not that bad. He went to work again and is trying to be more productive every day while healing his back and resting as much as possible.

He is no longer has to take as many medications. He is no longer taking the allopurinol, in combination with his steroids and other chemo specific treatment. So this at least cuts his morning regimen down from 16 pills to 10 pills.

His next appointment is on Thursday, in the meantime he is working hard to stay hydrated. Keep praying, it is helping us all get through each day.

Day 13

Dad was able to sleep in today, after his late night with the longhorn game. They removed the box spring of the mattress, thinking it would make it easier to get in and out of bed. Good idea in theory....but instead of getting out of bed and already be standing, now when he gets out of bed he is on his knees and has to make it to standing. So I think this idea will be short lived.

The baclofan is working better for dad as a muscle relaxant. He said he only had one small spasm last night as he got up to go to the bathroom. The spasm did not last long though. He decided not to go to Church today since he was so wiped out from the lack of sleep over the last week.

Dad came over today for caldo and the Cowboy game. We had a great lunch, jammed on Rock Bank and saw some of the game. The whole time he was pushing fluids---all in hopes to avoid IV fluids tomorrow. Let's hope it worked.

Day 12

Last night was a slightly more restful night for Dad. The new muscle relaxant held him over until around 330 this morning, then his back started to spasm. He promptly ate a pickle, took his medicine and was able to go back to sleep until around 8 this morning. He was feeling good enough to go and grab some breakfast this morning and then came back home to relax. His back is very sore when he is not having any muscle spasms, but he is doing his best to stretch the muscles and keep hydrated.

The goal for this weekend to is to stay hydrated so that on Monday he doesn't need any more IV fluids. Our other goal is also to not have to go to the ER due to back pain.

The new muscle relaxant seems to be helping him more and more. We spent the afternoon visiting with him and he was moving and stretching most of the time. He tried to teach Jacob how to play guitar, but Jacob is only interested in making noise.

Dad was going to try and eat some halibut tonight, since it is high in magnesium as well as lima beans and black beans for potassium. In the meantime he keeps eating pickles and drinking pickle juice to keep his muscles from cramping.

Tomorrow he will go to Church, provided the night has been good. Have a great weekend- Dad's off for a nap before the Longhorn game. HOOK'EM!