This is about a week late, but wanted to make a post tonight to share a couple of things about what has been happening.  This picture shows how they strapped me down every day for the twenty treatments that I got that ended last Monday, I think I explained it before, but they would lay me down with a foam thing under my forehead and another wedge shaped one under my chest that almost touched my neck and chin, my nose is about 1/2" from the table and I had to be careful about pushing the pad and paper down to the table to give me as much clearance as was possible.  It was only masking tape so I could have moved and broke it if I really needed to.  The yellow pads created a layer for the radiation that kept the treatments from going deeper than they wanted them to go.  Lucky I was only tied down like this for the last 10-15 minutes of each 25-30 minute visit.  The black band really served two purposes, one of course to help me hold still, but the second reason to me was more important.  Alot of people have had MRI's or CT Scans and know how narrow those bed/tables are, this table was that narrow or more so there would have been now way to keep my arms up and still without having the band holding them against my sides.  As I said the scheduled twenty treatments ended last Monday, but Dr. Dean decided to give me two more treatments on a slightly different machine on Tuesday and Wednesday that concentrated just on the crater on the top of my head.  With that machine I only had the band around me and one or maybe two strips of masking tape to just remind me not to move around.  These two treatments took less than 10 minutes total and then I was out of there.  I go back to see him in June to see how I have recovered from the "radiation" sunburn on my head and neck that has me losing layers of skin on a daily basis and at that appointment, I think he will schedule another PET and CT Scan to see if there is anything left hiding in there that made it through this round of treatments, the scans will probably happen about the second week of July because they want everything to settle down and be more normal before they look again, I guess it's like the 100 day tests I had to do after coming back from Salt Lake.  Last time I posted a picture of when I lost some of my hair, well I hung on to what I had for a while, but finally gave in to the inevitable, this next picture shows what will probably be my standard hair situation for quite some time.

Again I only took the shot from the front because no one wants to see what is on top of my head yet, hopefully some day soon I can take a picture of the top of my head that won't be too offensive  I got some prescription stuff to put on my head that is suppose to help it heal and keep the infections away because of my almost constant loss of skin because of the burn.  You can see a touch of pink at the top of my head, that is from the burn.

On to other things, Patty had a pretty good week last week and was feeling so good that Patricia and her went over to Amanda's house last Thursday night when Matt was watching Holden while Ryan and Amanda went to the temple with Ryan's aunt and family.  That started out as a really good thing, but they left the house about 6:00 pm and didn't get back home until after 9:00, it was very good that she could go over, but she has been paying for it most of the weekend.  Then Saturday Amanda gave Ryan a wonderful party to celebrate his graduation and to celebrate him passing his boards to become a doctor of Physical Therapy.  We also stayed a little late at that one and so she was still wore out Sunday when we were suppose to go to Ryan's graduation ceremony.  I couldn't really make it there either because my head burn was driving my crazy all day as well.  We enjoyed seeing everyone at the party and were happy to have Bruce and Cara stay with us Saturday night, I'm afraid we weren't the best hosts we could have been, but I think they understood.  Then today Patty had more fun as Amelia Emett drove down from St. George for the day to take her to see Pitch Perfect 2, they had both been talking about it for months and were determined to go see it.  I'm not sure how long it will take to get her wind back, but hopefully it won't take more than a couple of days.  When she is like she is now, we have to become lip readers because she can't get enough air in and doesn't make much noise.  It has to be inccredibly frustrating to not have the control over your actions that you and I take for granted every day, especially after having such a good week last week.

I haven't seen or talked with Dr. Te's Office yet, I expected to need to get blood work done and see him during the next couple of weeks, I think I probably still will, but I haven't heard from him yet.

Well, until next time, I hope everyone is well and safe, we'll be thinking good thoughts for all of you, until next time.

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.

It's been way too long

It's the first day of spring 2015 and I can't believe that Nov. 10th was my last post.  So much has happened that I can't even begin to remember everything.  After making it back from Salt Lake, I was getting ready for the tests and things that they wanted me to have on day 100 - which would have been about January 26th +/-.  I was pretty weak for a little while and wasn't much help around the house for the first few weeks, I had been let out and sent home before they really wanted to, but in their words, they would rather I be down here being with family, friends and caregivers for Patty, rather than being alone in a hotel room in Salt Lake - they were probably right about that.

Anyway, we had a pretty quiet Thanksgiving, I think we had "Bobby" sandwiches patterned after Capriotti's which is a turkey dinner in a roll.  I was still fighting some nausea, so I wasn't able to really enjoy a lot of my pumpkin pies, but I struggled through and ate them anyway.  As December came on, I was doing a little better all the time and we were looking forward to Christmas, it was Holden's second one, but it would be his first one to have a little clue about what was going on.  We had a very good time with the family during the holidays and we enjoyed it very much.  The New Year came without much celebration, I think we made it until about 10:00 and caught a live shot of somewhere on one of the Spanish stations and then went to bed.

I had seen Dr. Te a couple of times and had given some more blood to check on how everything was going after the transplant.  The blood tests all looked pretty good and Dr. Te was pleased.  So January 26th came and went, it wasn't until near the end of February that I got the 100 day tests - at about 125+/- - I had extensive blood tests, a pulmonary test to see about my lung capacity and a bunch of xrays of chest and full body.  The results were all good, So after the tests I started on my Pomalyst again for maintenance, I'm on the 4mg dose, the same one as before the transplant,  I guess the drug is new enough that there really isn't a "maintenance" protocol in place, So I started with the 4mg, but hopeful that after a few months we can drop to a lower mg doseage to hopefully minimize the side effects.

Unfortunately during the past 2-3 months, the Squeama Cell Carsonoma (spelling?) on my head has come back and I am scheduled for a CT Scan and PET Scan next Tuesday to see the extents of where it is and make sure it hasn't migrated to other parts of my body.  More to come on this after I know more.

Now to address the Elephant in the room - in other words the condition of my dear wife Patty.  We had arranged for 24/7 coverage for her while I was in Salt Lake, I am very thankful for family, friends and her caregivers, especially Cora during that time.  When I got home everyone helped out a lot because it was several weeks before I was able to be much help at all.  For Patty, living with MSA (Multiple Systems Atrophy) is a terrible, terrible thing.  It's not a lot of fun for her caregivers either, but for her it is really terrible, sometimes we joke about the "box of chocolates" from Forrest Gump, because none of us, including Patty really know what to expect each day and sometimes each hour or two.  Her blood pressure is a constantly changing challenge for all of us, it can be 160/90 and then 20-30 minutes later it can be 90/60 and she is passing out on us regularly.  She tries very hard to be as independent as she can be, but it's getting harder for her.  Just imagine how it would be to be in a full body cast down to your fingers, with some joints, but with weights attached pulling against your normal movements.  Then imagine a small line in your mouth dripping a small but steady stream of liquid into your mouth, then imagine your insides rebelling and refusing to perform normal body functions that the rest of us take for granted.  And all the while being under some level of sedation - not on purpose.  It is not fun to be her.  She is the strongest person that I know, but this rotten stuff is more than anyone should have to endure.  We try to make her as comfortable as possible, but it is usually a moving target.  Just when we think we are addressing her needs, they change.

I will post again soon, Thank you all for your prayers, concerns and help.  Until next time.

Way past time for an update I think it's Day 24+/- ?

So, Day Zero (0) was Oct. 17th, Halloween was day 14, so November 10th should be Day 24. The last time I wrote was about Day 13 to tell about the trials of getting out of the hosspital.  A lot has happened since then, which most people know about, but here is an update.

They did finally let me out and then on Friday Oct. 31, I picked Matt up from the airport so he could watch me for the weekend.  We had a good weekend together, I had to go to the clinic on Saturday to give blood and then I put Matt back on the plane and then went back to the room to get ready for the Monday and Tuesday appointments.

A quick word about the room.  If you have to use an extended stay hotel in the Salt Lake area, I would recommend the Candlewood Suites by the Salt Lake Airport, the rooms were nice, and clean and the staff was very helpful.

Monday's appointment was pretty un-eventful, they said hi, did what they needed and kicked me loose.  I wish I could say the same about Tuesday, from the time they took my tempurature it became a non typical appointment for anyone.  They sent me to get a scan of my neck since they thought I had a blood clot in my neck - they were right about that one.  So that brought on the prescription for the lovenox blood thinner that I now have to give myself by shot twice a day until New Years.  We won't even talk about the issues with COBRA insurance policies before you have an automatic payment set up.  So, the other big item that happened during that Tuesday was the removal of my central line.  I had to go through the whole set up for the removal, but it really took them less that 5 minutes in the operating room and I was back to the prep and recovery room for a few minutes before heading back up to the 8th floor and finally getting released so I could go pick up Russ from the airport as he had scheduled to come up for a couple of days.

As with Matt, I was very grateful for Russ coming up, and as it turns out very, very grateful that he could extend his stay a day to drive us home.  We had a good couple of days, on Wednesday, we went to Antelope Island State Park.  Neither of us had ever been there and we learned a lot about the Great Salt Lake and the Island.  We got to see a number of Bison as we drove along the east side of the island but never say any of the other 3 large mammals, Mule Deer, Big Horn Sheep or Antelope.  On Thursday we went up to the Park City area, I was hoping to show him the zip lines that they have, unfortunately, no one was using any of the facilities, but we were able to see all of them and it got him interested to see again sometime.

Friday morning we got up fairly early, packed the truck headed up to the hospital for my exit interview.  It must have gone OK, because by 9:30+/- we were heading down I-15 with our backs to downtown Salt Lake heading for the point of the mountain and southern utah.  We had a good trip and were able to stop in Parowan for a few minutes to see mom and dad before getting home mid afternoon on Friday.

That pretty much brings me up to date, thanks so much to everyone that helps, has helped, will help our family during these trying times - more on that later.  hope everyone is well and safe,  until next time.