Update after Radiation

It's been almost four weeks since Stevan had radiation. He's been tired. His head has been red, dry and scaly. Each night I put Aloe Vera Gel or Aquaphor on it to try and heal it up and keep it moist so that it wont make him scratch at it, since it itches. It looks a lot better now, but I continue to put Aquaphor on it since it still seems to get dry, I guess due to the cold weather. He looks good bald. Before we got married he told me I didn't have to worry about him going partially bald, that he had a good hairline. I told him I liked guys with either a full head of hair or completely bald. I guess I'm getting the latter this part of our marriage. LOL.

Stevan is now taking his Velcade shots and his Zometa infusions in Paris. He just finished his 2nd round of Velcade last Thursday. His second round of Velcade has hit him harder. He has been nauseous after he eats but has nausea pills that he can take to help. He says since he's not been throwing up, he hasn't bothered to take them. He has been more tired than usual but it could be from the after affects of the radiation too. He has been in more pain with his bones. We don't know if its due to the Zometa, the bone hardening medicine, doing its job or if its just the fact that his bones are so soft, causing the pain. He had pain with Zometa last year after he began taking it. The pain less as his bones harden and the medicine does its job. It might take a month or two though. Today he said his left hip seemed to popped out causing him so much pain he went to his knees. He said he was sitting when it finally popped back in, again being painful. He's worried that his hip bone has deteriorated, which is not good because that area has already been radiated, so it can't be treated with radiation again.

We know his bones are very soft for the most part because during his bone biopsy in the hospital the doctor hit a couple of places that were very soft. Those were the most painful places for Stevan and the doctor had to change the place he was biopsying so that Stevan could stand the process.

Two weeks ago seemed to be the hardest on Stevan. He had some things going on which made him depressed, seemed to make the pain worst, as well as his personal outlook. He told me that he really thought he was dying, and he just didn't have the motivation to keep going and do things because he hurt so badly. I believe some of it was emotional pain, not just physical pain, even though he was having plenty of that. With much prayer and support from family, friends and myself I think he's working though it. Last Friday, when I came home he told me he had finally had a good day. He said he hadn't had much pain, and he had done some walking around Brinkley's Auction that afternoon and it didn't seem to bother him. Saturday and Sunday also seemed like good days for him as well. Monday night he told me that he thought he was going to make it, he didn't feel like he was dying.

I share this because we have come to realize not everyone understands the scope of his pain and the emotional toil his cancer is taking on him, as well as me. Stevan doesn't complain much, except to me and a few others close to him. He's a very private person and defiantly doesn't want anyone to feel sorry for him, but he wants them to understand what he's going though and understand him. God has walked with us throughout this journey, holding our hands, wiping our tears, and carrying us when we could not go any further. He always provide for us when we have no idea where the next dollar will come from. We have had some wonderful friends and family that have helped us out and continue to ask what they can do for us. I even have parents from school asking to pray for us. All is appreciate and never turned down. We are humbled by how much people care and love us. We just wish that we could do more for those that help us, but I pray that God will bless those who give and protect you from the evils of this world. You are special to us and we love you.

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