My Husband, My Life, My Love, My Family, My Cancer
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oh my. I have had so much to catch up to on here. Every time I login to catch up, I log in again a week later and fall behind again. I had a scan back in late January that showed progression in my brain. They said I could start a trial in Feb or March. It still hasn't started. I just went back for another brain MRI yesterday and had a call with the NP today to go over the MRI. They said my lesions up there have grown just a little but they want to scan for leptomenengia (sp???) again. So allover a bad start to the year. Today I got a message that I am scheduled to speak with a neuro Dr. at MDA in almost 2 weeks - sigh.
My mother keeps telling me I should get on some medicine to calm me down and stop crying, but I think it's pretty natural to be sort of emotional about all this. And I'm not sitting around crying all the time. But if I were I think I'd have a right to.
So sad to read of those we have already lost this year, all the "stuff" everyone's been going through. Happy to read of all who are stable and active. I have read every post on here! Whew. Goodnight....zzzzzz
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Oh the sleep game, yep can't remember the last time I actually slept all night, many moons ago! The saving grace is that I don't have to try to function at work anymore. Although I do miss many parts of my old life including my work peeps.
kikimoon Cancer just plain stinks and I hope these two weeks go quickly. Keeping the faith that this trial will be good to you, fingers crossed. Of course it's totally normal to cry and be emotional fighting for your life! I think you will know if and when it's time to medicate if you are struggling with your emotions. We all know ourselves better than anyone and your mom may be speaking from her emotional worries about you. Hugs((()))
Always trying to keep up with all of you lol. Trying to get in a morning routine to check in here while I have my coffee.
Hi to all here and wishing everyone a good day.
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good to see you Kikomoon I’m sorry about your progression. I have scans coming up myself next month so I’m dreading that feeling again. I’m with you. Friends to friends. Support.
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Hubs came back from the corner shop with a can of Pringles and news that the local street cat Bob passed away on Tuesday. They thought he was sleeping on the pavement but he had curled up to die. Bob actually had an owner on our street who went and got him back after he was catnapped at Christmas for two months, but he just didn't seem the same since his return. Supposedly whoever nabbed him took him to the vet and that was where his neck chip was scanned and they found the actual owner. Perhaps disease was found at that visit.
He came round ours for food occasionally, and he stopped by Sunday night in the rain and cold and his meow was not right - very throaty/croaky and he'd lost a lot of weight. He even came in the flat for the first time ever, we put down a towel for him by the front radiator and he drank a lot of water and had some kibble. Monday he came around again and he curled up asleep on our bed like he had always lived here. Our cats were just curious, maybe they knew. Nurse cat Midge was most concerned. I pet him a little on Monday and he had pain in his back haunches and pelvis, but after an hour he wanted to go back out.
I feel so sad he's gone, not only he was a local since we moved here, but the fact he died on the sidewalk and not in a nice comfy spot even though his owner was nearby. I like to think we gave him some comfort at the end and that he passed in his sleep.
Guess Ill go pick up the bowl of kibble and water from the front foyer
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Sondra-What a poignant story. Glad that Bob experienced comfort and love in his last days. From what I know, cats like to go away by themselves to die. I probably would like that too but not as possible for humans.
Kikomoon-Sorry to hear your news. Hope the trial will be very effective for you. I see nothing wrong with crying and being upset when we are dealing with life and death matters. I think it is healthy to process our emotions out rather than to bury them to make others comfortable.
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oh Sondra. That’s so sad. I love animals! At least he curled up on your bed for a rest. He was saying goodbye. Precious lil thing. Sorry for the loss of the local pal. That sucks !
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Kikomoon, I can empathize with the tears and you cry as you need to. Don't internalize your feelings. In your pocket and sending healing thoughts. Let me know how it shakes out and what future MRI finds. Do what you need to, not what others tell you to do. Tears are a completely valid stress reliever along with exercise and other things.
Mel, I am excited to try different stuff in the sandwich maker. My counterspace is super small so I will have to find another place to store it. Might keep it in a small bag or box or even find space in the oven. If not there, get one of my over the door hangers and attach to the inside of a cupboard door. We will see. This morning will be a basic and perhaps I will take the bus to get some frozen pancakes and syrup to make different versions of the burger. I was already happy that wheat bran kept stuff from being moist after chopping without altering taste, being able to even just use the sandwich maker to better cook the egg is great. Many possiblities. So I will be having my typical Mcdonalds breakfast order, egg mcmuffin, hashbrown and tea. This will be for a much less expensive price. I will also need more maple and brown sugar to make oatmeal. I also must not forget to add cheese shreds with the egg as well if out of slices.
Looks decent enough so will walk outside again, it has been a while for walking outdoors, have done indoor marching or mall walking so that feels good too.
I will be having my brain MRI tomorrow afternoon, not too nervous at this point but will always have the possibility of progression in the back of mind.
In everyone's pocket who needs it, Kikomoon as well, sending my love and support.
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Jumping in pockets for all having tests.
It’s likely to snow this weekend after a week in the 70’s, so I’ll be putting everything I just planted in the bar for a couple days.
Next week we start a walking routine again, it harder because it’s so rocky up here but our neighbor has a circular path that we’re free to use anytime
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Mae, glad to hear that you can get in some walking. I am still planning on going out today as it is supposed to rain tomorrow. Alot of the snow has melted but still looking out for black ice but that is OK.
Update, feeling very full, had the english muffin with egg, cheese slice and sausage. Messier than McD's but good. Can also use for other things I am sure. More compact way to cook multiple things at once. Might also be able to make bean patties as well.
Also read up on egg shells. Planning to clean shells and use spice grinder to add to different meals to boost calcium as I have lost my taste for milk lately.
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Mel, I get inspired by mara, too. Not enough to actually DO something, but at least to THINK bout doing something… I hope your upcoming scans show stable.
Kikomoon, it's nice to see you here. I'm so sorry about the progression in your brain. I hope your upcoming appointments give you some answers or at least a plan. I think you have every right to be emotional. Cry when you want to. It's a big deal!
Sondra, I'm sorry about Bob. It sounds like he came to say his good-byes to you. It's so sad…
We were supposed to be leaving for Yosemite today. Got cancelled due to the Park closure. Oh well.
Waving hi to all.
Carol
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Just checking in to catch up with everyone's news. I am so happy to hear about Golden's news and it was good to see Kikomoon again although I am sorry to hear about your progression. I hope the trial brings you some good. Sondra I was also sad to hear about Bob the cat.
I finished more labs, my quarterly CT scan and bone scan this morning. I'm trying not to check my phone neurotically to see if results posted to the portal. I don't usually have anxiousness about scans but my fatigue levels seem higher lately and I just am not keeping up the way I used to with things. My CA 27-29 is still within normal limits but jumped from 12 to 18 since January. The trend in 2021 and 2022 was down so this seems like a sudden spike but also maybe an anomaly. Otherwise my labs were okay. This weekend is supposed to be beautiful with sunshine before the rain starts again next week so I am going to try and get out and enjoy it.
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Sondra, I am so very sorry for the loss of your furry family member. It is always too soon when their paws are taken to cross the rainbow bridge. He is at peace and I am in your pocket lending support as it is still very sad.
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sondra" so sad and sorry to hear about Bob. Our Aelfric has elevated calcium which indicates cancer. So far he is doing okay. He was always a picky eater but we are monitoring him for pain and distress. Right now he is just himself. He will be our last cat, given our ages and other issues. My DH is home from hospital and I am doing his physio exercises with him as encouragement. I am so wanting to kick his ass for being so sedentary and slouching and slumping for so many years. That and MS has bitten his ass. But he is determined to get back to at least where he was before he fell.
Had my PET yesterday. My MO is on holidays and said I could talk to his locum or wait until he is back at the end of the month. If it is crappy news I want it from him. my MO. but if I am okay, stable or better than I want to know now. I would like to know about the glowing anomaly in my upper left arm bone. Is it still there?
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emac~my scanning time is next month and I’m already thinking about it too much. I know I can’t help it. It’s been a rough few months putting up with this constant pain in my body especially my mouth. It really knocks you out. It drives me to the breaking point threshold for pain. Not fun at all. I’m going to ask for a dose reduction. From 100 mg to 75 mgs. My next appt after scanning. Being a cancer patient is hard work. In your pocket for results.
Good night to all. Hope you have a peaceful sleep. It’s all we get sometimes.
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elderberry ~ I hope you get the answers you desire. I hate waiting but then again I hate scanning. And all testing to be honest. I’ve about had it with everything medical.
My sister has to have radiation to her face /sinus cavity. Five days a week for a period of time. The tumors have stopped growing. But her voice still sound like a cartoon character. She is still battling alongside us all as well. I’m sick of cancer.
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Pocket duty for scan results for everyone.
Mel, in your pocket as well, wish I could be there for you in person.
Elderberry, I hope you find out sooner personally as well, sending positive thoughts.
I was not given results of my CT scan back in Feb but no call to me means no problem.
I was pretty silly tonight, was out mall walking with older DB and SIL. That part was fine though I tired more, just had micro rests, less than a minute and kept going. The silly part was, I'm going to put myself on the floor and try to get up. It was foolish because I need to strengthen muscles, walking is no problem, need more push strength in my legs and arms. I figured out exercises I need but did not need to plant myself on the floor tonight. Made it up once though I almost topped forward. Sat for a minute and got back on the floor, second time I almost could not push my leg and arms. Had to butt walk the floor to get to the couch, first few tries I could not do it, I told myself I was not crawling to a phone for 911 and said push dammit, then the leg lifted when I pushed. I need to work on rear leg muscle strength with several sit to stands a day, hamstring curls, squeeze glutes and abs whilst sitting and keep consistent. I won't practice getting up if I've been tired, that was dumb. Little steps, not the whole shebang. Going to ask about PT to help as well since they know exercises specifically to build the strength needed. I am 51, I refuse to accept the risk of falling and having to call 911. Anyway, going to bed and get some good rest. I have an MRI at 330 pm tomorrow. Not too concerned about it at this point. Sorry for all the yapping, take care all.
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Oh mara, glad to hear you got yourself out of a difficult situation. I too get stuck if I end up on the floor. It's so difficult to deciide when or if to exercise, perhaps not the best when you have been out during the day !! We know you have a positive attitude and will try your best to improve your mobility, we will be behind you, cheering you on.
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Good Morning and Happy St Patrick's day for all who celebrate. Although we all need a little Irish luck in our lives!
Good news here, I had my 3month CT and it's stable! Of course relief and I say I reset my clock again until June when scanxiety starts creeping back. I'll take the mental break for now. Wishing everyone else good luck for stability and a little mental relief. DH and I went out to a nice dinner by the beach was a beautiful sunny day yesterday. I'm trying to remember to celebrate each milestone and appreciate each day I have been given.
That stinks about Bob I do wish our animals could live as long as we do so it wouldn't hurt so much when we lose them.
Mara you're an amazing strong woman, you definitely inspire more people that you know!
Mel that chronic pain definitely wears us down. That's why it drives me crazy when I see these MBC commercials and the women and dancing around like they're living pain free...really???? Um that's not most women that have MBC. Yes, someday are better than others but they certainly don't tell the story! I hope your sister is able to push through radiation, glad the masses are stable.
Wishing everyone a good day!
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Denny and Cookie, I did choose to put myself on the floor, twice. I think going forward, I will start with the sit to stand squats, walking throughout the day and wall pushups to increase push strength. Need to walk at home today, far too rainy to get to the hospital, plenty of time for outdoor walking as the days are warming up. Surprisingly, I did not wake up sore, I thought for sure shoulders and back would be super sore. MRI is today for the brain followup.
Mall walk was nice, stopped at Walmart, looked at freezers for me but they would eat up precious floor space so I will need to adjust what I am buying and section the small freezer off and just not buy so much stuff. Only bought pancake mix and syrup, had a gift card for Walmart so only spent a dollar. Going to try making one in the sandwich maker since it could work for multiple things. Laundry and household chores need to be done too. Full day on the go.
Take care everyone.
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Kikomoon - damn cancer! News of your progression stinks. But our sisters here with brain Mets are great examples of treatment that is working. I wish the same for you🤗🤗🤗.
Sondra - what a moving Bob story. But it made me sad😟😟😟
Mara - I have yet to get on the floor following my knee replacement in October. I’m sure my quads are stronger (I still use the recumbent bike 30 minutes a day). But I fear not being able to get up. Your efforts may send me to the point of trying - note I said “may” - lol!
Pocket duty for scans etc. Happy St. Patrick’s Day ☘️
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Goldens, I can understand what you say. I am taking it slow, getting up twice when getting up, doing hamstrings etc. I would like to get another bike but there really is no room. I am also marching around the apartment to add more steps in an easier way. If the rain is not too bad, I plan to walk up to the hospital, if it is still pouring, I won't do it as I cannot see managing an umbrella and a cane. Thought about getting an umbrella hat which would look stupid BUT leave both hands free as I am very comfortable with a cane.
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Kikomoon- it is very hard to hear when there is progression of this damn disease. Letting your emotions out anyway you want is better than holding it in. Exceptional and knowledgeable ladies in these threads are there for you as we all are
Cookies- yay for stable! Celebrating with a great dinner sounds wonderful
Sondra- your Bob story made me so sad. I too love animals. If I could I would have a sanctuary where all animals would have a safe and happy place to live.
Mel- dealing with constant pain brings every single part of life down. I have been getting pain through my back, shoulders, neck and headaches. Itsucks
Wishing everyone Happy St. Patrick's Day and luck of the Irish! I don't say that to my husband because he is English and just looks at me.
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Well, just adding that I made one pancake in the sandwich maker. Used pancake mix and water. Whisked with my tiny little whisker until it was thick and without lumps. Did not make a mess as I was diligent about waiting until the green light turned on, set timer for 5 mins but it was done within 4. Added a bit of butter and 1 tbsp of syrup which is not gross in calories. I think pancakes will be more of a snack for me, I will likely just toast english muffins in my breville and make eggs, pancakes and frozen sausage dishes in the sandwich maker. So far am not regretting the purchase and looking forward to what other stuff and can make omelette type dishes. Not bad for 30 dollars.
I really enjoyed it too, first time in years I have enjoyed pancakes and syrup.
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Sorry to have been such a downer everyone!
His owner IS on the street whatsapp and she messaged they buried him in the garden by his sister. Still catch myself expecting to see him stalking around, or to show up alongside hubs coming home from work, meowing for a bit of dinner. He recognized his humans and would follow along on your heels if you saw him or if you called his name. I gave our two extra snuggles the last few nights.On the plus side, I walked without a limp for a good 4 hours today after finding a really great total hip exercise last night.
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Sondra, glad you were able to get in some extra exercise. I am looking forward to walking more as the snow is mostly gone from the sidewalks and we did not get a ton of rain.
MRI was fine, long wait for the nurse to put in an IV in my hand. Yuck. I fell asleep while in the machine and they did not tell me the contrast was put in at the start though it would explain the momentary nausea that came and went quickly. Missed the bus on the way home so just took a cab. Between the at home, walk to the bus stop on the way there and through the hospital, I got around 4000 steps which I am good with. Treating myself to another takeout dinner as I am starving.
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I got my scans back and they are both stable! Breathing a huge sigh of relief. The bone scan actually reads "normal uptake in bones and soft tissues." The overall impression reads "negative." I'll have to wait and go over them with my MO on the 6th. The CT scan impression is stable but it noted two small pulmonary nodules that were there on the scan in December and "trace pericardial effusion." Has anyone else here had that? I don't have any cardiac symptoms and since there isn't a sense of urgency I am thinking it's probably just an incidental finding that isn't serious. I plan to ask more questions about both of those at my appointment. Doing my happy dance until the next scans in June! I'm in pockets for anyone else with upcoming scans and proceedures.
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Emac, joining you in your happy dance, I am very happy the results were good.
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Emac- Congrats on the good report.
Sorry I am not commenting on each post. Me bad. I read all your posts. Just don't have the ... energy...? to comment like I used to. Sorry.
Life is hard.
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Not too much on the agenda today, already shredded flyers, laundry is underway and I am contemplating my breakfast. Thinking of making a teeny pancake, smaller than the one yesterday, adding maple bacon seasoning to the pancake mix as well. After that is cooked will do up an omelette that will contain an egg, cheese and some ground beans for a small omelette. Not sure what else I want to put in. I just want a full breakfast with shrunken portions.
I plan to get some at least indoor walking and if the snow melts back a bit, at least a 15 min or so walk. I am so looking forward next week as the weather is warming and I should be able to wear sneakers on my walks.
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congrats on stable. Way to go!
Everyone understands Candy. Everyone.
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