Thursday, April 30, 2015

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.

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