Well, there goes the hair again

When I started Radiation, Dr. Dean told me that I would most likely lose hair on the back of my head and it would probably be permanent.  I took this picture this morning, I probably could have gotten another angle that showed more loss down the back of my head, but then you would have been subject to looking at the completely gross crater that no one should have to look at.  The Radiation is going pretty well, I just completed my thirteenth session, I have 7 more scheduled, tomorrow, all next week and then the following Monday.  I saw Dr. Dean yesterday and he gave me some more information on what to expect coming up.  He said he may add a couple more sessions that will concentrate on just the big crater area to make sure it is as gone as it can be for now.  Then we will wait for 6-8 weeks before taking the next round of PET and CT Scans to plan the second round of radiation treatment.  That will work out pretty good for us.  I really needed a few weeks in May and June to take care of some house keeping, house selling and house building matters that we have been planning on as a family for the past year.  I do wish that the crater would dry up a little more, it still leaks too much when I stand up and tilt my head after sitting for a while, the good news on that is that it is not quite as disgustingly smelly as it was a couple of weeks ago, but it still has odor to it.  I haven't had the Radiation Therapist take a picture of me strapped down to the table, I'm still planning on that to give everyone a laugh.  I was talking to one of the therapists today about the movement and what the machine does during the process and was surprised to learn a couple of things about it.  I asked her about the machine movements and operation.  The treatment consists of 9 or 10 - I will count again tomorrow to determine which it is- anyway, after they spend the 10-15 minutes taking X-rays to make sure I am positioned in the right place for the computer program to shoot the right spots, they come back in the room, strap me down and then go out and start the program.  The machine moves to the first location, which is currently to the left of my head as I am laying on my face, when it has the right position, the head makes a sound like it is "focusing" to the right distance or fine tunes the angle and then when it is ready, the therapist has to turn a key at her control panel to have the machine actually release the radiation in the amount programmed for that particular location.  The length of radiation does seem to vary a little bit from location to location, but not by much.  Then the machine starts the move and focus and ready process again, currently they have it running from my left up and over the head and ending somewhere above and to the right of my head, I know it's not as flat from the right as it is from the left because I can't see it to my right the way I can when it starts on my left side.  You will also notice from the picture, that the had that is still there is quite short.  Amanda and Matt gave me a haircut Tuesday night after chunks of hair came out in the shower Tuesday morning.  I thought I'd get a jump on it.  I didn't feet great on Tuesday and I was kind of grumpy during the haircut time, I'm sorry to both of them about that.

Monday I started my next round of Pomalyst for that other little issue that I deal with, I wasn't able to get up to see Dr. Te this month, probably in May, then I can start moving things out of Coral Canyon to the garage in Parowan.

When last I posted, we had returned from Parowan after dad's funeral, Patty was quite tired and run down, but we figured she would bounce back and get some spunk back into her.  She did, but not entirely, she unfortunately is having more periods of being run down and not very responsive.  We know she's there, but her body doesn't seem to respond to the orders her brain is trying to give to it.  She is really "freezing" up quite a bit and her arms and hands don't always have the movements she is used to performing.  She really likes it when the ladies do the stretching, massaging and exercising with her, because although it wears her out, it loosens her joints more than normal and she has better dexterity after they are done.  We have been getting her to bed earlier since we came back from the funeral, it just seems that she is running out of juice a bit earlier in the evening that she was.  Morning is still her best time with a few exceptions,  Then we both take a mid-day nap to help us get our energy back.  She is also going through another problem time with her blood pressure.  Her "orthostatic hypotension" is a real pain in the backside,  She is passing out on us more now than she has for a while.  Wednesday Karen, her nurse was making her weekly visit and when she was getting ready to go, Cora took Patty to the restroom,  Just a minute or so later, she called us and Patty was out, Karen had never seen her during one of her episodes.  She finally came back (Patty) and we put her in bed for an hour with her bi-pap running to help her diaphram work better, after she got up, Josh showed up and then Matt got here after work a while later.

I don't know if I've touched on this or not, but the day before I was suppose to start my radiation treatments, Matt moved in with us and has been here ever since.  He has been a big help and we really appreciate him.  I had forgotten how much Josh had done for us when he lived with us before, it is great to have a very good support system.  Amanda helps too, as much as she can but Holden is hitting the "terrible twos" in perfect stride and demands a lot of her time.  Ryan is almost done with the rigors of school, studying for his tests and everything associated with that, so their together time is a premium.  I'm not sure how long Matt will stay, but probably when I'm done with this round he'll go home at least for a while.  We are truly grateful for all of them.

We continue to be thankful for all your thoughts and prayers, our thoughts to out to all of you.  Until next time.

Back from Parowan - recuperation time for us

Last Saturday, April 18th we celebrated the life of our father Fred Dalley Dalton at his funeral in the Main Street LDS Chapel in Parowan Utah and then placed his remains in the Parowan Cemetary overlooking the valley.  It was a very good service.  Mom decided that we would do one viewing/visitation period from 9:00 am until 10:30 am Saturday before the funeral was to begin at 11:00 am.  Our trip began Friday afternoon when we (all 7 of us & 3 dogs) left our house in two cars to go to Coral Canyon where we planned on spending both Friday and Saturday nights.  The drive up went pretty well and we were all getting along pretty well until we realized that I had forgotten my little cooler that I always pack our medicines in.  We had left then here at home during our hurry to get on the road and to move cars in and out of the driveway while we were gone.  We talked about ways around it, but in the end I got Matt to travel back home for us to get our medicines because Patty and I were without all of our medication.  I am thankful to him for his willingness to help us and even though he got back late, it really helped us out for the long day we had in front of us on Saturday.  Saturday was a very long day, we left Coral Canyon at 8:00 am (got up earlier than that) and didnt make it back there until after 8:00 pm.  We were all pretty tired and after getting some food in us, went to bed.  Sunday morning was spent cleaning and getting all of us ready to go, Amanda and Josh stepped up and took good care of Patty to get her ready, I'm afraid I wasn't at my best and they decided to rescue her from me that morning.  I am thankful to them for that.  I'm still learning patience.  We got home Sunday around noon, just in time for the priests to come by and give Patty and I the sacrament that they do most of the time.  Then we spent the rest of the day watching all the Hallmark movies, Patty's retirement money is still with Hallmark, so we have to support them whenever possible, plus, we like the sappy love stories.  Over the past couple of days, Patty has actually done better than I thought she was going to do.  She has been very tired and worn out, but she hasn't been "out of it" like she often is when she gets very tired.  She is having trouble talking, her diaphram is not helping her too much, so I have to remind her to breath deeply every now and then so she can make some words that everyone can hear and understand.  She is doing remarkably well compared to what I was expecting for today.  Hopefully over the next couple of days she'll perk up a little more.

I had my 6th treatment today, I think they are going well.  Last night I leaked less fluid on my pillow case that I have in quite some time, hopefully that continues tonight and Dr. Dean was right when he predicted that by the end of this week that I would stop leaking almost totally.  I decided today that I am going to give my phone to the radiation therapists and ask them to tak 3-4 pictures of me when they have me all taped up and fastened to the table so I can share that with everyone.  I am still very fortunate that the side effects have all be fairly mild.  I still have not experienced any nausea and from what they tell me, I may not.  The open sore on my head is in a very strange way, it seems to be shrinking a little over parts of it, but that is causing it to itch and at times be very sensitive, I guess that would be expected when an open sore is healing, but it drives me crazy at times.  I have noticed that I am getting tired more, I've been having some very good afternoon naps - not intentionally most of the time.  But after I wake up, I ususally feel pretty good.  I just began my week long break from my Pomalyst, so I'll have to see if that helps or hurts the side effects from the radiation - who knows?

It was really great to see everyone last weekend, I really appreciate the effort that some family members went through to come and help us honor dad.  We really neet to plan a big family party under better circumstances.

Until next time.  Thank you all again for your thought and prayers on our behalf.  They are felt and appreciated.

1 down, 19 to go - and goodbye Dad, thank you, I love you

As I said in the blog last week, I met with Dr. Dean last Thursday where he outlined how he would be approaching my treatments.  I went to their other office last Friday and got the other CT scan he wanted from the perspective he wanted to treat me.  I laid face down on the machine bed surface, which was more like a table top with a sheet covering it.  They had a wedged shape piece of foam that I laid on and rested my forehead on another piece of foam so they could take the scan and finalize the treatment plan.  I was expecting them to call Monday morning to get me in Monday afternoon to begin the treatment, but they didn't call until about 3:30 Monday afternoon and set the first treatment appointment up for 10:30 this morning (Tuesday 4/14).  I went to the appointment and they came out to get me.  I honestly didn't know what to expect the treatment equipment to be or look like.  When I got in the treatment room, It looked like a very large X-ray type machine where the head can rotate around you while you lay on a bed (table) that is very much like the bed on a CT machine.  They had a wedged shaped foam piece just like the scanner and also another foam piece to put my forehead on just like on the scanner.  They told be to lay very still and they two Radiation Therapists went to their control panel and looked at some pictures they were getting from the machine to set the treatment angles that Dr. Dean wanted.  When they had adjusted the machine and ran some practice runs, they called Dr. Dean into the room to get his OK on how they had me set up.  He looked at how I was placed and the machine was placed, gave them a couple of suggestions and then they proceeded to tape me down in that position to make sure I didn't move.  I had the feeling as they first put Saran Wrap over my head, then a little tape, then some cloth then a lot more tape, anyway I had the feeling that I would have looked like one of those people that get "duct" taped to the ceiling or a wall, I couldn't really move at all.  So then they went back to their control panel and started the actual treatment, it took less than 10 minutes, I didn't really feel anything.  They let me up when it finished, put my shirt on and left.  The other 19 treatments should take less time and right now I have a standing appointment for 10:30 am, Monday - Friday.  I still don't know what the side effects on me will be, I guess time will tell for that one.

Nearly anyone that would read this blog already knows, but our family had quite a weekend.  On Saturday night at 10:55 pm, our father Fred Dalley Dalton passed away in the care center in Parowan, Utah.  Dad had only been in the care center since the end of March, mom made the decision to place him there because his condition became to hard for her to handle alone.  I am very grateful to Mike and Beverly and to Bruce and Cara for helping her as much as possible,  Dad passed very peacefully with much of his family around him.  We are all very grateful that his suffering was minimal.  I am not saying this very well, but I am very grateful for both our parents, they taught all of us to be be good reliable people.  I love them both and I am grateful I could have parents like them.  On a side note, dad passed away on his mother's birthday.  We all think she had a good birthday as she passed away when I was just a baby.

The funeral will be this Saturday at 11:00 am in Parowan.  I am looking forward to seeing a lot of family this weekend that we haven't seen in quite some time, but it's kind of a shame that we all don't make the effort to get together more often under better circumstances.

Thank you all for your thoughts and prayers for all of us.  We wish you all well and hope that your family is well and happy.  Until next time.

You would think that Myeloma would be enough - I guess not.

I'm on day 11 or 12 of this round of Pomalyst for the Myeloma, everthing there seems to be going pretty well, should be doing blood tests and get looked at in the next couple of weeks, but it may have to wait a little while.

Patty isn't doing too bad, she did some things last week that really took it out of her and she's having a hard time getting her strength back.  She is quite weak and is sleeping and resting more than she was 2-3 weeks ago.  She is  better the last day or two than she was before that and are hopeful she'll continue to get better and stronger.

Now to my new "other" issues.  I mentioned in my last blog that the Squamous Cell Carsinoma on my head was coming back.  That was probably a little bit of an understatement.  Anyway, I had the PET scan and CT scan, they use the same machine, just set up slightly different with different operators to look for things.  The PET scan was full body and it works with some radioactive sugars to locate "hot" spots in the body that equate to cancer, the CT scan was limited to my head and neck to see if the Squamous had started to migrate anywhere else.  Unfortunately the results show that it has started to migrate into my neck, so after talking with a group of Oncologists in St. George, Dr. Te told me the group's recommendation was to use radiation on me to start with.  I asked them to find me a Radiation Oncologist down her in Vegas because of the logistics involved in doing radiation.  Although they only last for 5-20 minutes each, the treatments are every day of the week, so going to St. George is really not an option with taking care of Patty and travel and taking care of me during the treatments.  So, they referred me to Dr. Gregory Dean and the Radiation Oncology Centers of Nevada.  I met Dr. Dean this morning and went over how he is planning on treating me.  He had all the written reports on my condition, but since the PET and CT scans had been sent by mail, he did not have them yet, hopefully they will come today or at the latest tomorrow.  He talked with me about his thoughts of how he would try to direct the radiation at the back side of my skull and down the back of my neck to take care of the big nasty looking thing on my head.  He said that they would start out with 3-4 weeks of treatment on my head and neck and then take another PET and CT to see how things are progressing and see where phase 2 of the treatments need to concentrate.  I felt pretty good talking with him, He spent a while with me going over his approach to the treatments, hopefully after getting a look at the scans, he will confirm his thinking.  He wants to start my treatments next Monday, and I already have an appointment scheduled for tomorrow (Friday) to have a scan done in his offices to confirm his treatment approach.  Then on Monday they will call me and tell me what time of day to come to begin the treatment.  I understand I will not feel well, how bad, I don't know yet.  Dr. Dean was kind enough to let me know that most likely, I will permenantly lose the hair off the top and back of my head, so I'll either get very creative with the comb-overs or take up shaving on the areas that will still grow some hair.  I'm sure others in my family will know more about this process that I do.  I will wait to see what they do to me and what it does to me, I'd rather not have too much information, it will just make me worry and fret too much.

I have not said much at all to mom about this latest news.  She has had plenty to think about with dad going up to the rest home, but I guess I'd better give her some if not most of this information, otherwise someone is bound to say something around her and she would probably be a little upset with me.

Well, that's enough for now, I'll write more later after I'm into the treatment.