My Husband, My Life, My Love, My Family, My Cancer
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Good morning to all! I know I have t been posting much but I do read everyday and enjoy Mara’s posts and thank her for keeping things going. I had my scans Wednesday and bone scan results were stable. CT results take forever (at least 2 weeks) which is awful for a hospital system with a medical school! Also had a nerve ablation in my lower back following a successful steroid injection. Unfortunately the ablation did nothing to help with the back pain. So I’m beyond frustrated. Even though I’m not supposed to take them as I have only one kidney, I’ve started taking a couple Motrin every day just to give me a break from the pain. I’m tired of taking Arthritis strength Tylenol that is like a sugar pill to me and does nothing. We have lots of sports activities with the grandkids and just making it into a football stadium or soccer field is beyond difficult. The pain is so fatiguing and I sure get that for most of us, our get up and go got up and left. Been trying to get my fall decor up and it has taken me most of the week to do it. 10 minutes of putting stuff away to make room for fall then requires 15 minutes of sitting for pain relief. Same thing with kitchen duty and laundry. My hubs is so good doing all the vacuuming and dog duty.
So I’m always here for pocket duty for all, especially those who are struggling through this disease and the crap it throws at us. Wishing all a good weekend!
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Thank you everyone. I am sorry for the Xeloda exhaustion @threetree but glad you are able to go out. @intolight I am also sorry about the cabin but something else that is better will likely come along. @shanagirl I am glad you are feeling more energized. Thanks for the info. @candy-678 I am sorry about the BIG D but glad you are resting up.
Lost rest of post so start over. Am doing laundry, floors throughout day and deciding on meals. Looking at rice cooker, add in beefless ground, thought about a stretch for the beefless ground with lentils and beans, eggs and perhaps some rice. I have taken to the idea of two to three servings of stuff, can take leftovers, put in container and have on hand to serve with my billions of burritos. I have also taken to putting diced potatoes in as well. I will see, using a lot of unusual fillers. I will post meals of course.
MEAL 1 Lentil heavy meal. Put in 1/3 cup canned lentils, 1/3 dried red lentils and a 1/3 cup of beefless ground. Instead of water, located an almost empty tube of queso with jalapeno, added water shook up the tube and using that as the water. Taco seasoning with little salt and a bit of garlic parm as well. Set rice cooker for 90 mins, will stir periodically. Will definitely fill me up. I will post about the taste.
REVIEW MEAL 1. I did use the same ingredients listed above, only addition was some stuffing mix I keep to the side just to reduce amount of liquid. It was DELICIOUS and filling with all lentils. Will put rest in the fridge, serve on side of burrito I think. The taco flavour was wonderful, no need to add a binder. Picture a stew with ground beef or gravy. Not especially pretty but oh so good. I will put rest in the fridge and like I say, the double shot of lentils makes everything so filling. There was some cheese in there too.
MEAL 2 In the rice cooker, some leftovers, new lentils added, some of the dashed hashbrowns and a precooked and sliced up burrito, bean and cheese. Added some watered garlic mayo, not enough left to pour, added more queso and jalepeno, nothing else. I feel like this will be super filling. Going 30 mins at a time and checking if a stir is needed, if too much liquid, keep heating it.
I have also decided to buy a reasonably priced air purifier from Amazon. Planning to put it in corner part of shelf near but not to close to litter area. Keep reading people stating it cuts down the stink of the box and ease up on the dust and fur. I plan to check my bedroom as well since thought I already had one in there. Located a humidifier I forgot about though so can use that in winter when house dries out. I also made an impulse buy of a wee dual bucket washer. I can do two cycles at same time, one side set up for washer, other side can be the softening cycle and while that one runs, can put clear water for proper rinse, can spin in one of my portable washer. Main use I see, undies, bras and hankerchiefs. It is charged like a phone would be so better. Arriving wednesday, paid the 20.00 for it. I also came across a hack to keep clothing from getting tangled up which is to use a plastic empty water bottle and lid. Supposed to work similar the dryer balls I use to cut down on static. I may try this as I do have water bottles on hand in the fridge.
Now that I have lost posts along the way, just going to save draft regularly. Hope everyone has a good day and in pockets for all.
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Making a separate post re my ability to combine stuff to stretch meals easily. Recently discovered Kraft Dinner, take noodles and store airtight in separate container, use about a 1/3 cup at a time. When adding stuff to the rice cooker, I can use partial Kraft dinner cheese mixed with taco seasoning. Both of which are cheap. Lentils and beans are both inexpensive, they make a nice cheese type of seasoning when using lentils and the cheese/taco seasoning. Taking bottles of queso or sour cream and lime crema and when nothing comes out, put water in and shake it, use that as the cheese. I also am using portions of stuffing mix as a filler too. Diced hashbrowns are good as well. I have not had to do a full grocery shop in a very long time.
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Cookie, Mara- Thanks for the shout out. Cookie, I do not have time off these meds. They are every day, continuous. I do get out to church on Sunday mornings. And I keep up with my responsibilities- groceries, bill paying, etc. I just do not get to do things that others say they are doing- ball games (not that I would want to in this heat we have been having), festivals, etc. I need to have access to a bathroom when I need it— Quick!! I was thinking about going to a concert locally in November, but decided not to get tickets, as it would be a big venue and large crowd and I don't want to take the chance of a Big D accident. And the fatigue makes me not want to do too many things, or big things that take a lot of energy.
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@goldensrbest It is good to have a DH to get down storage bins, etc. as I know I can't do it. However, we may give it all a pass this year. My DH struggles with his knees and is slowing down although the PCP at his last physical said he was doing well. I am able to walk better than he even with this broken leg! But I can't bend well and lifting is next to impossible.
@candy-678 Going out to events eludes me too even though I am only on weekly chemo and not daily pills. My DD offered to buy me a ticket to see Mannheim Steamroller for Christmas, but with the expense I worry something will come up and I would have to miss it not to mention all the walking, stairs, etc. I miss worshipping at church but the last couple of times were not good for me. For one I have to take the mini oxygen concentrator and I worry the small bit of noise bothers those around me, and even though people said it didn't bother them, I was very self-aware of those who moved away. If I have to isolate myself I might as well worship online. Two, I usually end up having to pick up all my stuff for a bathroom break, another annoyance, and end up waiting in the foyer for my family to come out so again, I might as well stay home. And three, since I am on chemo it is to easy for me to get sick and it isn't even winter yet! Excuses I know. I am a former pastor's wife so I know them all. I didn't understand people's situations back twenty-five years ago as well as I do now and I am sorry I was not more attuned to them. It is all part of the wisdom gained with age.
@mara51506 @shanagirl and everyone else I missed… I pray you have a good weekend with minimal pain and SEs. It is good to have this online community of people who care and are willing to be honest and open. It helps in sharing the load of the burden.
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@goldensrbest I am so sorry the nerve ablation did not work out, that would most definitely be so frustrating. I am glad you can chunk out the fall decorations and rest between. That is what I need to do as well when doing chores, breaking down boxes and such too. Getting made up and dressed requires breaks in between even. I do mean that the resting is not frustrating for you, just glad you can get stuff done. I am glad you have your DH helping out as well. You would think with all the cancer drugs they come up with, there would be better oral treatment for you as well beyond the injections.
In your pocket with whatever you want to eat.
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I second the idea, @mara51506 that "You would think with all the cancer drugs they come up with, there would be better oral treatment…." I can't believe how many drugs they have, and yet none of them are easy, much less truly effective.
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Intolight- Your post really got to me.
Mannheim Steamroller!! Wow!! I would love to see them!! But I get it about expensive tickets and the chance you might not be able to go— not feeling good that day. And that would be a big venue, with lots of walking, I am sure.
If you want to attend church in person, then go ahead. Who cares what others think. The sound from your oxygen machine- - - could you sit a little separate? My church is small, but we have 4 or 5 fold-up chairs sitting along the back wall. I used to sit there during the cold/flu season. That way I was not sitting in a pew shoulder to shoulder with other people. Also, that would be better for you, sitting in the back, for bathroom breaks and having so much to transport with you. And maybe being a little separate from the germs. The last several winters - I have been on treatment for multiple winter seasons - I have been staying home during the peak illness times - if I hear there is a lot of illness in our community or with our church people. So, is there a way to sit in the back of your church in a separate chair??
"Excuses", that pisses me off, sorry for the language. I don't think they are "excuses" but "valid reasons". The things you mentioned are valid reasons for you staying home from church. I just got into a "conversation" with a church member about him saying - not to me specifically, but I think he was including me - that those that stay home and watch the service online are "lazy", his words. Oh boy, I gave him what-for. And "wisdom with age", he is in his 80's.
You said you are a former pastor's wife, so don't take offense, but sometimes I think "church people" are very judgmental and have no sympathy for others or see other people's views. I am a Christian and have been most of my life. I grew up in church. But I think churches can be their own worst enemy. They can hinder people from coming to church with their attitudes.
Let's see what they say if they ever have to go through what we do!! I bet they would change their views then!!!
You take care, and I am thinking of you.
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Mannheim Steamroller - I always look to see when they are in our area for their Christmas show. Love love love their music. But the tickets are crazy expensive and I also struggle with the concept of navigating the huge venues they play in. I play their Christmas cds all holiday season. I also would like to see Trans-Siberian Orchestra but same issues. When we lived in Michigan we did see Mannheim at Interlochen, a fine arts academy but that was many years ago during the summer so no holiday music.
And to my prior post, we have two grandsons who carry our storage bins up and down from the basement.
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@goldensrbest Happy to hear your scans were stable!Sorry that the ablation didn’t give you relief you so deserved. I can’t imagine how frustrating this is for you.Fingers crossed that your dr can provide another alternative treatment.
@candy-678 Ugh I understand your apprehension with the big D, I would certainly feel the same way. I truly wish everyone had an overall better quality of life on treatment. I can only hope someday future treatments come with less side effects to truly live better in this stage. The commercials we all see are sooo deceiving portraying rainbows and butterflies…annoying.
Sending hugs to so many here who are struggling physically and mentally❤️
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Count me in with the Manheim Steamroller fans! I too play their CD's a lot during Christmas time; some of my favorites. I've never been to a concert though, and I don't think I've ever noticed one happening, but I'm sure they have around here, I just haven't followed what's happening live around here for years and years. I remember seeing them ages ago on the old Today show where they interviewed Chip (whatever his last name is) and then they performed. I really like their combo productions that blend classical and rock.
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