Sunday night into Monday was not good for Kramer. By 8am when we were starting our trek back to Lacrosse he said his pain level was at a 6-7. UGH. The bumping down the spring pot holed roads didn’t do it any good. I am not sure why but he always tanks over the night. 7am-10am are always the worst of his day. We’ve been waking him up in the night to get all of his meds…but we still end up there with high pain levels.
At his appointment we saw Dr. Mariner. We’ve been working with him all along except for the hospital stay. We all commiserate about the cancer moving to his bones. About half way through the appointment the pain doctor came in. Between the two of them the meds were tweaked with the hope that things will be a little better these next few nights.
This is all a “test, guess and revise” problem. They test the amount of pain, guess what will fix it and then revise the pain med plan. It’s so hard…no one wants Kramer in pain but finding the exact balance is so hard.
We have an appointment on Friday with the pain doctor again to see how it all goes over the week but were told that we are welcome to stop in if anything needs attention sooner.
By this evening the pain was okay again. I feel so terrible when he’s in pain. There is nothing I can do.
From there we were off to radiation and then homeward bound. With the changes in meds that meant a stop at Wal-mart to the pharmacy again. It was a bit of a struggle to get meds again. The doctors kept several of the medications but upped the dosing. So new scripts were written but insurance wouldn’t renew them all immediately. We can pick up one in two days…one in four days and so on. OH MY WORD. I swear the pharmacy management will be the death of me.
We made it home just in time for the bus kids to get here. Kelli and Kalissa had done childcare for most of the day. Kalissa did sneak off with Carver to see the ENT doctor. Carver has had a tough haul over the last couple months. He’s had ear infections that won’t clear. He has double ear infection AGAIN…or still. We aren’t sure. Either way he’s getting tubes in his ear for the THIRD time in two weeks.
It was so good to see the childcare kiddos. I haven’t seen them for over a week. I’ve been at the hospital with Kramer. Oh the kids missed me. I got lots of hugs which was PERFECT. Oh I’ve missed them. They give me a sense of normal life.
After all the kids were picked up, we realized we were missing the TV remote. We started looking for it and realized when we picked up the couch to look under it that the couch was broken. UGH. The bottom of the frame snapped.
SO…on top of everything else, we need new furniture for the living room. It’s 10 years old…Kramer likely would benefit from a lift chair so I guess it’s time. Thankfully I had been putting a little money aside for new furniture for the last year or so as I knew the time was coming. A lot of overnight guests use our couch. Also if you ask any childcare provider, they will say they go through furniture faster than the normal person. Everything gets so much more use than the normal set of furniture does. My couch is napped on daily by two kids….the kids play on it really often during the day. It can be a boat or a hospital bed or a bus or anything else they can think of. I really liked our couch so it’s a bit a of a bummer but it happens. If we’re going to be spending so much time in the living room with Kramer being sick it might be a good time to spruce things up a bit anyway.
Kelli and Kalissa stayed for supper. Kalissa had put shirts together and sold T-shirts. The two of them were working on getting the shirts organized and distributed.
That’s Gannon there sporting his shirt.
Originally we were only going to do shirts for our family. Then we had others ask for them so she took orders. There was a fast turn around to get them printed so there was a short deadline to order. We’ve had lots more people ask for them so she’ll likely do another order period in a week or so. We’ll put something here up on the blog in case any of you want them too.
The girls helped with some other paperwork stuff too….there is so much to do. I don’t know how anyone handles this all alone. The shirts say, “Kramer Strong In this family no one fights alone”. Oh my…this is so true. From our kids to all of you, we feel surrounded by wonderful supportive people. Thank you for that.
Four more days of radiation. If you read this after 9am today, it will only three more then!! One day at a time….
I think it’s so sad that people with cancer have to worry about getting insurance company permission to have the drugs that will help with pain!
Something is definitely wrong
Thinking of you both at this very tough time
Consider asking your pharmacy if filling less than the full prescription works help with the insurance. Given the rapid changes, I’d be tempted to only get one or two days at a time. This way, I think, the insurance company wouldn’t think you still had pain meds to take first, then you could just get the new meds.
For some reason I get your blog post a day after you post so I’ve bookmarked your site to visit everyday! Easy Peasy!
Praying the next few days are easy on your both and that once the radiation is over, his pain levels will drop.
As always, you are in my prayers.
I understand how it feels when the doctors have to guess at dosages for medicine. My husband is a type 1 diabetic and uses an insulin pump with a continuous glucose monitor. It was advertised as an ‘artificial pancreas’. The sad part is, it’s not! They have to guess and tweak the settings for insulin delivery and this has been going on for over a year and a half! I can only imagine how bad it is when the person you love is in pain. As always, thanks for the update!
Seeing someone you love in pain can be worse than enduring the pain yourself! Keeping you all in my prayers.
Just wanted to say I’m thinking and praying for you and your family. One of my children has cancer also. I know the ups and downs. We are in a good place with it right now. I hope your husband finds the pain relief/treatment he needs.
I commenting to tell you to check with your insurance or doctors about a lift chair to see if it’s covered. When my mother needed a lift chair her doctor subscribed it or something and then her insurance (Medicare) paid for it.
Thinking of you both at this tough time.
I can’t imagine having cancer, dealing with all the paperwork, the pain, the travel and then those pharmacy rules! I keep you in my thoughts daily!
I guess all the pharmacy rules concerning pain meds are supposed to protect people and curb abuse, but for those who really need them it’s just one more thing to cause stress. You deal with all of it for Kramer, but I wonder how someone who doesn’t have someone to do it for them deals with it. Don’t even get me started on insurance companies who want to rule the whole situation when it’s doctors who should be calling the shots.
So Praying for you guys. Such a struggle but as you say one day at a time. As I know you are finding the bright spots and appreciating them. Love to you all and thanks so much for the update.
How I wish insurance & pharmacies had patients and family as number 1 in handling emergencies like Roger’s ! Maybe if hospitals had pharmacies on hand with scripts filled on the pdq ! Prayers for all.
We identify with Carver! All sorts of tubes in our son’s ears, ear infections non stop, so it seemed, then tonsillitis continually! Finally found two terrific ENT doctors. No wheat, no dairy, lots of water, no second hand smoke. We wish him relief and wellness!!
Our neighbor has a lift recliner with leather or vinyl upholstery. The man slides too much when he’s getting up and off the chair. Sure don’t want Roger sliding!
All for now from your busy body friend. I feel like I’ve known you all for years!!
Drive Safe, Gloria
PS Fabric upholstery in place of leather/vinyl was my reference but I forgot! XOXO Gloria
have you let your doctors know of the problems you have getting Kramer’s pain meds filled? my doctor has gone to bat for me when i have problems with insurance. he has spent hours over several days dealing with my insurance company directly. he just had to go up the “chain of command” until he reached the right person. result: i got my meds! let your doctors know!!!
i agree with Gloria about ear infections. no wheat, no dairy worked wonders with my son 20 years ago. advice from his old-time country doctor.
i feel for you Jo. it is rough, i admire your strength and positive energy for Kramer. and the ability to find the bright spots and “enjoy” them in your journey. take care of yourself too.
If you buy a lift chair if all possible Have your husband try the chairs out. Like everything else they feel very different. I ordered mine on line and wish I could have sat in it as I would not have ordered the one I got. You also order according to his weight. After a long time I finally got use to my chair but the next one I will try out before buying.
Hugs and prayers for you all. I was looking at the veridian credit union swap sheet and there’s a lift chair on there listed like new.
Have the doctors talked to Kramer about the pillow he uses at night? I have scar tissue in my neck and have to use a very flattish pillow or a shaped pillow that supports my neck. Big pillows or too firm pillows wake me up in terrible pain. With Kramer wearing a neck brace, you may have to try different pillows to find the one that doesn’t hurt. He may also need to alter his sleep position. I sleep best on my side since my injury.
Both of you are in my thoughts and prayers!