Home Again

This has been a long day for us. Waking up at 7am to eat breakfast, before heading out to his first radiation treatment of the day. Afterwards we went back to the hotel for Stevan to get another couple of hours of sleep before checking out of the hotel.

Yesterday after two rounds of radiation, Stevan had an appointment with Dr Lida Radfar, dentist, to give him an oral check up. He had to have his teeth check out in order to get put back on his monthly dose of Zometa (his bone hardening medicine). She said he had some gum disease and gave him a prescription of oral mouth wash to use over the next two weeks. Dr Radfar requested he come back today at 4pm for a deep root cleaning and get a cavity filled. She also is concerned about his three bottom front teeth. There appears to be some bone loss in his jaw there which could cause problems. She is going to watch it and have him come in for a cleaning every two to three months.

We picked up his script after checking out of the hotel and went to lunch. Not having anywhere to go and having to wait until his 2:30pm final radiation treatment, we went back to the Stephenson Cancer Center. They let Stevan lay down on a couch in the back for a couple of hours so he could sleep while we waiting for his turn. Afterwards, his forehead and around his eyes were really red and his brow slightly swollen.

We then headed to see Dr Radfar again. We had quite a wait to get in for her to begin working on him, and she was concerned about his redness on his face. But all is well with his teeth and she wants to see him every three months for cleanings.

Long road to the house but we made it. We will get lots of rest this weekend and I'm back to work next week. Yuck! I hate taking off... There will be twice as much for me to do next week for me to get caught up.

Thank you for the prayers throughout the past weeks. Stevan has follow up appointments with Dr Selby and Dr Herman in a month. Until then the plan is for him to take his chemo shots and bone infusion medicine in Paris this next month.

And Its All Gone

I meant to post last night but I believe this head congestion got the best of me. We both laid down around 5pm for a nap and didn't wake up till around 9pm and went back to sleep til 7am. Needless to say we got a good nights sleep last night. We both needed it.

So whats been happening. We got up here Monday, got his radiation treatment, went to the hospital for his shot of Velcade. We grabbed a late lunch and checked into the hotel. Stevan got a really bad headache and went to bed.

Tuesday we headed off to his 1st round of radiation for the day. We got to visit with Dr Nicholas afterwards, who was a bit concerned with Stevan's severe headache from last night. He said that if it continues he wants to know about it. He said that he might prescribe him some more steroids to help if the headaches continue. So far since Monday, Stevan hasn't had any more headaches like that.

After Stevan's second treatment for the day, I went to subway for Stevan's dinner and then on to Buffalo Wild Wings for dinner for me. As much as he likes hot wings, his mouth is a bit tender due to the radiation on his head. I couldn't tempt him with any.

After we got back to the hotel, Stevan went to the bathroom and was too quiet for too long. When he came out, this is what he showed me. He had pulled out his hair! And found it funny!

I took the trimmer after him. I think he did it on purpose so that I would finally cut it. He finished it off with the razer for a smoother look.

Stevan shaving his head.

Here is the final results of his shaved head.

Remembering

So I have come home the last three afternoons to barking dogs and chickens, who come running out to see if I have food for them. But the house is quiet and kind of lonely without Stevan here. Don't get me wrong. I have lots to do or need to do, but don't feel like doing half of it. The last two nights I have graded papers and taken too long to do it, since I'm watching TV. I then come to bed and read a chapter of two of a book I've been reading to relax.

Tonight I was going to begin working on my reaction/summary paper I have to write for my graduate class since I had the house to myself. Didn't happen. Maybe tomorrow night. Nah... I have dinner plans with my grandfather and my aunt who is in for a few more days. My conference/planning time tomorrow has a parent coming in to discuss a student so I can't do it then either. I still have to plan on being out next week also, make copies of worksheets and such for my students while I'm gone with Stevan. I can't seem to find enough hours in the day. I do hate being gone from work. Being a teacher seems to be the only job that I have had that even when you take off from work, you still have to work or you have more work. How fair is that?

Stevan's been doing fine the last couple of days. After radiation he eats, and then goes back to the hotel and sleeps for about three hours. Today I got a call from Nance at the Cancer Center. "Hello", and I hear "How is Stevan? Where is he at? He was supposed to be here at 11 o'clock for an appointment with Dr Selby." Well he's probably still at the hotel asleep. I will call and see where he's at. Yeah he thought his app was at noon. Me explaining, "Nope that was your radiation treatment downstairs at noon. You were to go upstairs to the second floor at 11." I then call Patti to let her know, he is on his way. And the funny thing about all of this is, I typed up a schedule, one page for each day to keep Stevan and JC organized.... Well they didn't read it for today.

Ok I've made mistakes too. Just last year I thought he had an appt. for an MRI at OKC. I took off from school and we drove up there. Went to check in... "You don't have an appt. for today. Your appt is for next week." Really?! So we ate lunch and drove back home. I'm really surprised I haven't made more mistakes like that but I try to stay organized and I have a computer printed out blank calendar that I write Stevan's appointments on and other important info that is related to him and his treatments or problems.

The results of the doctor appt. from today is Stevan will be taking his chemo medicine Valcade on days 1,4,8,11 on a 21 day cycle, indefinitely. They also are putting him back in his monthly dose of bone infusion medicine. They took some x-rays of his ribs. He's been complaining of severe rib pain in his sides, so much it's hard for him to move around. Didn't get the results of that back yet.

And to think I was planning on going to bed early tonight... Ok I was in bed by 10:30pm, but I've been typing this up on my iPad as I lay here. Have a great day tomorrow everyone! I need to get some sleep.

Good weekend

Stevan has had a good weekend. I'm posting a photo of where Stevan got his shot of Velcade on Friday. The nurse said that it would make a rash and not to worry, that was normal.

He had problems Friday and Saturday night sleeping, due to the 40 mg of Dexamethasone he took with his Velcade shot on Friday. He says his arm hurts where they gave him the phenuma shot on Thursday.

Stevan and his friend JC will be headed back up to OKC in the morning for the week. I will be headed off to a week of work. I will have my work cut out for me this week, getting the kids back on track, making sure to get some grades taken for the new semester as well as getting things ready for me to be gone next week with Stevan. Hopefully I won't beat myself up for not going with Stevan this week. I ask for prayers that this week will go smoothly so I won't regret not going and not being there with and for him.

Getting Discharged

Stevan is really tired. The fatigue is setting in. He also has said that it seems like his depth perception is off. When we went to the cancer center to get his treatment this morning, we talked to Dr Nicholas, the radiation resident under Dr Herman. He said that the MRI on Stevan's spine came back showing that the cushion around his spine is fine. He still has some comprimised vertebras which is pinching nerves, causing his back pain but the rest of his spine and fluid is fine!

They discharged him before his second radiation treatment this afternoon. We have a place to stay tonight and he'll have another radiation treatment in the morning and then get his Valcade shot. We should then be headed home for a relaxing and lazy weekend.

The nurse gave him a flu and pneumococcal shots before he left the hospital. She instructed him to wear a mask for the next two weeks when out in public. She also stated that anyone who has been sick, been around someone who is sick or might be sick should stay away from him. His immune system will be down he could catch anything that comes around him. She even told me to get my flu shot since I haven't had mine yet and I work with kids daily.

Stevan will have to come back next week for five or six treatments. He'll also get his Velcade shot on Monday and then on Friday, which could make next week really hard on him.

My plan is to stay home and go to work next week. Its going to be tough not being there to take care of him, but we have discussed having a friend to bring him up here and stay with him throughout the week, who can also drive him to his treatment each day and watch him. Stevan will be sleeping most of the time anyway.

This evening we had a great dinner. He wanted steak so we got him steak. The sad thing is it came back up after a few hours. :( He got a shower and put himself to bed around 5pm.

I'm going to close out and call it a day too. I need to get a few things done and jump in the shower and go to bed early tonight too. We were both excited that we won't be woke up every four hours tonight... Yes it's the little things sometimes that we look forward to. Thank you for your prayers. Only through Gods strength have we been able to get through this week.

Second Day of Radiation

Its late and I'm going to keep this post short.

This morning began early with Stevan being transported to the Cancer Clinic for his AM radiation. When we got back the BMT resident Dr Arlwas told us that the 24 hr. urine test came back with immunoglobulin A Kappa. What does that mean... the multiple myeloma is back. Then came in Dr Jackson from the Eye Institute came in to check on Stevan. They eye pressure behind the eye is about the same.

Dr Arlwas came back later with Dr Selby. They discussed  with us Stevan's drug options since he has had his transplant. At first Dr Selby wanted to look at putting Stevan on Kyprolis but after some researching some he found out that Stevan has to go through the regiment of Velcade first. He will be given it as a subcutaneous (under the skin) injection on Day 1, 4 and 8. Side effects could include fatigue (which is what the radiation also does), peripheral neuropathy (numbness and tingling of the hands and feet), nausea and vomiting, diarrhea, poor appetite, constipation, low platelet count, fever, and low red blood cell count (anemia). They were going to start it today, but after figuring out how the days would fall they decided to wait til Friday before beginning to start the Velcade.

He then went off to get his spinal MRI done around 1pm. It took about 2 hrs for it. He was then snatched from there and transported for his PM radiation. He already is having some symptoms from the radiation this morning. His spit glands are swollen on both sides. He looks like he has the mumps. He is complaining that his ears hurt. They are giving him pain pills to help, but tomorrow I'm going to ask if there is something else they can give him to help.



We are trying to track the swelling and the changes in his face.

You can see the swelling in his right cheek

Its Back With Avengence!

This morning Dr Jackson from the Eye Institute came to evaluate Stevan's eyes again. No change. He did say that the mass appeared to be about the size of two large grapes or a ping pong ball.

Dr Selby came in a bit later and talked to us. They were still waiting on the 24hr urine sample, bone biopsy and the official read on the MRI scan on his brain and discussed treatment options. He said their first option is to go for chemo treatment, either with IV or with pills along with the Dexamethasone. Second option is radiation, and finally surgery. He did say that by looking at the MRI it appears that the myeloma is in the first layer of membrane surrounding the brain (there are three layers that surrounds and protects the brain). He wasn't sure just to what extent it was in it.

At 1:30pm today we were transported over to the cancer clinic for a consult with the radiology team. We met up with Stevan's former radiation doctor, Dr Herman. He said the MRI from yesterday showed that there are several myeloma lesions in his back, and right arm socket and the mass behind his left eye has eroded a bit of the bone inside the socket. There is also myeloma lesions on several places on his scull. He said there was myeloma in the lining of the brain close to the fluid that surrounds the brain. Translation: this is serious!

He said they wanted to do a spinal tap and check his spinal fluids to see if the myeloma was in it. They also want to do a different kind of MRI on his back and spine to see the lesions better. This will happen tomorrow.

Treatment according to Dr Herman: full cranium radiation today, 15 to 25 treatments. This will cause fatigue, redness to the eyes, and more than likely permanent hair loss. Down the road, 3-5 yrs., he will develop cataracts and will have to have them removed. Dr Herman said they will work with Dr Selby and watch what they are doing with drug treatment so that they don't overdo the radiation and possibly stop it if the chemo is working.

When we got back to the room, the resident stem cell doctor came in and told us that the MRI was finally read.  He said where they thought the myeloma had invaded the lining around the brain was actually just the reflection of the bone. So they are not going to be doing the spinal tap after all. We told him that Dr Herman had began the radiation this afternoon and was interested in a new MRI on Stevan's spine and right shoulder to see if there needed to be more radiation done in those areas as well. He said that he would contact Dr Herman's office in the morning and discuss everything with him. He also said that they would have to wait until the bone biopsy comes back before they start Stevan on any chemo. They want to see the makeup of the myeloma to determine which chemo to use on it.

This evening we discovered that the doctors have stopped the Dexamethasone. We didn't realize it, but we plan on asking the doctors in the morning about it. We wonder if they stopped it because it didn't seem to be reducing the swelling.

Thank you for the prayers. God had given me more strength today than I could have ever had myself to deal with all that we heard today.

Eye Still Swollen

Here are come pictures of Stevan's face from this morning, so you can see the difference between his eyes.

We have had many visitors today. It began with the BMT Unit resident doctor who came to tell us that Stevan would be getting an MRI today along with a bone biopsy and marrow aspiration. He came back to do the biopsy at 10am. He did a pretty good job pain wise with Stevan. The doctor had to poke him twice to get a good sample. The results wont be back until Wedesday or Thursday.

 

After lunch, the doctor from the eye institute came back to evaluate Stevan's eyes. He determined that the swelling had not changed. He did clearify how they would biopsy the mass, if it comes to that. They will cut a small opening in the top of the eye lid and go in through the top around the eye and biopsy it.

 

Finally late this afternoon they took Stevan in for an MRI. They are looking to see exactly where the mass is at and where it has invaded. Is it just in the eye socket? Or is it behind the eye socket invading the brain? We are concerned with this because Stevan has exprienced some possible problems with his memory. Its not been anything major. He has not been as energetic as he had been. He's been sleeping a lot more too. We have brought these problems up to the doctors. This is why it is important to see what the MRI reveals.

 

They continue to give him 4mg twice daily of dexamethasone trying to reduce the swelling and the tumor size. The doctor said it should reduce it fairly quickly, if it Myeloma.  Hopefully tomorrow will give us some more answers.

Taking It Easy

We both slept pretty good last night. The transplant resident and Dr Selby stopped by this morning. They repeated what the eye doctors had told us yesterday. Selby said that they didn't want to get the Neuro team involved in order to have to take a biopsy of the mass. They are pretty sure that the mass is due to the myeloma cancer plasma cells. They want to finish running the test and do a full body X-ray to see if they can find any other myeloma any where else.

Selby is pretty sure they will find more evidence of myeloma else where in the body. He sounded scared to go into Stevan's scull and try to take this mass out. He said that if there is other myeloma else where they will have to treat it with chemo as well, so they might as well treat this mass the same way.

With this being Sunday, we were pretty sure that they weren't going to do anything today but this afternoon they came and got him for his full body X-rays. We will get those results tomorrow along with all the blood lab results that were done yesterday.

We have also been able to visit with a friend, Beth, who is also in the hospital up here. She had a brain tumor removed back in Sept. We had been meaning to visit her but never could find the right time. It was nice to visit with her since she is up here by herself most of the time. Stevan would get her to laughing so hard. I think it was good for both of them to share their stories and compare.

We got caught up on sleep and rest today. I'm concerned that this mass could be messing with Stevan's memory. I will be discussing that with the doctor in the morning. Tomorrow will start early and full of questions and hopefully some answers.

Again thank you for the prayers.

One LONG Night and Day

Let me start by saying, those of you who know me know that I am easy going and I get along with most people. We love coming to OU Medical Center and have had a good experience overall. However, early this morning the ER receptionist saw the NOT So NICE side of me. It took me raising my voice and getting nasty with them. I told him that we had driven 4 hours up there and sat in the ER waiting room 7 1/2 hours and I was about to page Dr Holter, who had told us to come up and get a CT scan. We didn't know if he had a tumor, or could have a stroke or what! He told me that he would find out what they could do in the back.

Apparently I rose enough of a stink, they called his name within two minutes at 1am. Dr Godfry in the ER examined Stevan and finally got him in for a CT scan around 3am. Afterward I was able to grab a few Z's by sitting in a straight back chair sideways with my head resting on the walls rail. I'm sure I looked a sight, but I felt a bit better. Around 4:30am the results came back. He has a mass behind his left eye which is making his eye protrude outward.

Dr Godfry called in the emergency eye doctor to come evaluate his eyes. She determined that his eyesight is 20/20 and the mass is not attached to or has any connection to the eye or the optic nerve. The mass is simply pushing his eye outward, which is causing him to have problems with double, blurred and problems with his sight.

About 5:30am, we were told that the BMT unit was having him admitted to room 750, to then determine what they needed to do with the mass. Dr Selby, from the transplant unit, came to visit and evaluate Stevan next. He explained that the mass was more than likely a plasmacytoma, caused by the plasma cells, where they multiply and crowd out normal blood cells, forming a tumor/mass. They want to take a biopsy of the mass, but they are concerned on how to exactly do that. Their first comment was "Can we stick a needle in and through your eye to grab a tissue sample?" WHAT? We don't think so. We had two doctors come in from the Eye Institute to evaluate his eyes, yet again. They concluded that they would follow his progress, but when it comes to getting the biopsy, they were recommending the neuro unit to get involved.

Dr Selby discussed with us the options we had to treat the mass after the biopsy. One option is they can treat the mass with radiation, but that could risk and damage the eye. Second to treat with chemo medicines, Dexamethasone (or there was something else he rattled off to use) and hope that it shrinks it down. Finally, they might be able to take it out.

They got a chest x-ray and did a lot of labs, including the 24 hour urine sample, to check out the myeloma levels in his system. They are looking at his back again and the problems he's having with it.

This afternoon we got some sleep. I forgot to bring my glasses, so I took out my contacts and went blind for a while to rest my eyes.

I figure we will be here for several days. I doubt if we get any answers until Monday. Thank you for the prayers. More updates to come tomorrow.

Ending Another Year and Beginning a New Year

Happy New Year everyone. We hope that everyone had a wonderful Thanksgiving and Merry Christmas also. Its been a couple of months since I updated everyone, so let me catch you up on the last two months.

Stevan was lucky enough to kill a big buck the first day of muzzel loading season. We had a terrific week of Thanksgiving in the woods, camping and hunting. Stevan was sick for a few days at the beginning of the week but pulled out of it with lots of sleep and NyQuil. Dustin was lucky enough to kill an eight point on the first day. Brett saw several bucks while she was out with Stevan. Me... yeah I wasn't that lucky to see anything long enough to throw my gun up and get one. There is always next year.

I finished a graduate math class in December and will be starting another one in a week. I have been short 6 hours of graduate math classes. By finishing these two classes, I will then be qualified to teach at the college level full time. Something I've been interested in for a while.

Stevan has continually complaining about his ribs and back hurting throughout deer season, but would never want to go get it checked out. Until the second week of December, when he and a friend went for a drive up to the hills. His back was hurting so bad that he couldn't drive. When I got home I found Stevan in bed. He couldn't hardly move. Even with several pain pills, he was still in a lot of pain. This got us very worried so the next day, he was still hurting. I called and left a message for Patti, the nurse at the transplant clinic, letting her know what was going on and what should we do. I then emailed Stevan's cancer navigator nurse, Sara (Orthopedic Oncologist, Dr Jeremy White's nurse) and told her what was going on. I soon got a reply in the late afternoon asking if we could come in on Monday. I emailed her asking when Stevan was in so much pain then that he was contemplating going to the emergency room to have them check him out, so I emailed Sara again and told her this. Around 8pm, Sara called us asking if we could come in the next afternoon. Dr White wanted to see what was going on. They were very concerned.

So Dec 13th we headed up to OKC. They did x-rays of his shoulder and of his back. Results: everything looks normal. Really! Why was he in so much pain and could hardly move? They were able to get him in for a bone scan of his back to see what was going on at a closer look. Result: at his T-4 vertebre, there is bone missing on the left side of it exposing a nerve. When Stevan sits or stands, it pinches that nerve causing pain.

Dr White decided to refer Stevan to a back speciallist and have him look at Stevan for a possible nerve block for his back the following Tuesday. The back doctor, saw Stevan for about three minutes and refused to do a nerve block. Stevan was feeling somewhat better by then so the doctor said there was too many risks involved with a nerve block. When Stevan can't stand the pain anymore, they will have to go in and do a repair of the vertebrae and build it back up to relieve the pressure off the nerve.

So for the more recent report. Several people have commented that they have noticed Stevan's left eye as being swollen. I didn't notice it until they pointed it out a few weeks ago. He had been commenting that he can't seem to focus out of it. The brightness from the snow on Christmas Day really bothered it and made it water.

Wednesday his left eye was so swollen it looked like it was being pushed outward. Between me and our neighbor, Bendette, we got him to go to Dr Butler, the optometrist. Butler said there was some pressure behind the eye but he couldn't make a determination if it was from the swelling or from something else. He noticed that Stevan's left eye was not tracking with the right one, it was stopping and lagging. He recommended seeing a neuro-ophthalmologist but also suggested contacting his cancer doctor and seeing what she recommended.

I called Patti, our wonder nurse from the transplant clinic that can move mountains, and left a message for her on Thursday of what was going on. She called me back this morning to let me know that she was going to speak with Dr Holter in just a bit and would relay the information on to her and would get back with me shortly. About thirty minutes later Patti called to say that Holter was concerned that this symptom is a result from the Myeloma. She wanted him to come to OU and get a MRI or CT scan to see what was going on. She didn't want him to take any chance by waiting till Next Friday when he has an appt. with his endocrinologist, Dr Hummer.

Stevan originally stated, he was not going, He would wait till Monday. I decided to call his mother. She came over and talked to him and then the kids started in on him to please go. He finally got a few things together and started the truck.

So here we sit, wait in the ER with everyone else, flu, stomach bugs and the crazies. They tried to take him back through the fast-track to get him in and out. Once they learned of his history, they sent him back out to the waiting room to go through the regular route. They said this is not a quick fix. LOL Really? What was their first clue?

I'm not really concerned about him getting sick with anything in here. He's been around so much over the past six months, and done so many things he wasn't supposed to be doing and he's been fine. His last several blood tests show that his counts are good. I'm just thankful he's here in case something is seriously wrong.

I will update as soon as I know something.