My Husband, My Life, My Love, My Family, My Cancer
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@candy-678 Last year following my Bone Mets diagnosis I and my husband and son, each came down wthi the worst flu I have ever experienced in my life. It lasted for at least 4 weeks. We were all so sick, couldn’t eat anything but chicken broth jello and ginger ale. Mouth sores, cough, I had also severe D because I was newly on my treatment meds. food tasted horrible….. Yet it was not covid. Just a random flu. It was in March during “March Madness”, the last time I was so sick with a flu like this was in the late 70’s. After that, Candy, I will never, never take another flu shot again, because after getting the flu shot so many times I ALWAYS end up geting a different variation of another strain following the shot. So I have not had any more flu shots and I feel so much healthier, I don’t get sick other than a cold here and there, and I feel my immune system is good. I go out publicly , don’t wear mask, because I believe they make you sick, with bacteria and fibers in the mask and lack of oxygen, high carbon dioxide. The fresh air feels so good to breathe in during the winter, and the sunlight feels so good too. So I don’t isolate in the house, but when I go out I wash my hands a lot.😊
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Intolight, is there a budget for someone to come in and clean the house weekly, that takes some pressure off you and your husband. I have thought about saving up and hiring someone to give my entire apartment a clean up but I would think it would help a lot. Other thought, pick a small area that you do, different one each day which would take less time to do and save energy yet keep it cleaner, I do this myself. In your pocket and vent with us and let those tears flow, sometimes we find new ways of handling things after a good cry.
I have finally found my issue that creates loose BMs and not sure why it did not find it sooner, leafy greens which kind of sucks as I really like them. I have been reading up and a lot of issue is that maybe the pieces are too big and chewing more or chopping up the spinach could make it easier to digest. II don't feel ill or anything so am going to try the chopping with wheat bran so it is not mush and go from there as I am not feeling ill. Worth it to see if I can improve my reaction to this as I do enjoy it and it can be good for you.
I did get some batter fish as something different to have for supper, can chop up beans, maybe spinach and wheat bran to make smaller and go from there, can still add croutons. Even though I had the issue, the breakfast of spinach and quinoa was quite good, enjoyable.
I forgot to mention that I am always in pockets sending love and hopes of some healing for mels mouth, Candy and everyone else as well. Have a good day as well.
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Sweet Mara, I have looked into a house cleaner. I had one in San Diego and she was a God-send. When we lost her I hired a professional company to keep things legal. There is no shortage of help in San Diego if you are willing to pay cash. But they want more than twice the cost here. I am unwilling to pay over $200 to clean our house every-other week, and I am not even asking for the whole house! We are not that messy either, and there is not a lot of clutter. I think they see a large house and think they charge more. My DD keeps asking around for me.
I am doing better today. I finished all the wrapping this morning, and after the family dinner tomorrow, I will be done for Christmas. I can then just sit back and let it all happen. Next year I am just going for the sitting-back part!
I am praying for everyone here. Our struggles are real and we all deserve peace.
Love, Chris
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@candy-678 , I'm a lurker here but progressive pulmonary fibrosis from rads makes me live like I'm immunocompromised. My ILD pulmonologist uses engineering studies (a hot topic since 2020) to come up with what I can do. Air quality, crowd size, activity, masking and meds you take all need to be factored in. 20 mg of prednisone daily throws me into this category. Check with your MO about what you're taking. Art museums and large grocery stores which are not too crowded have the best air quality and are OK with an n95 mask. Anywhere else inside with a limited number of people makes the n95 pretty foolproof for up to 45 min. If everybody is continually masking with at least a medical mask the safety window goes up to 2 hrs. On public transportation I double mask: a medical mask over the n95. Crowded outdoor events like a pro ballgame are out but less crowded events which can be watched away from the stands (like a college game) are OK. Church is out because of the singing; I did attend an Easter sunrise service. In the winter I occasionally walk outside with a friend. I never realized how much eating or having something to drink is tied to socializing.
Nothing is foolproof. This summer I treated myself to an outside restaurant lunch and, in spite of having every vaccine going, ended out with covid. I had to spend the night in the ER until the molnupiravir kicked in (can't take Paxlovid) and my fever came down to 102*. This six week bout was different: fever, headache, body aches and face/hand neuropathy but nothing much respiratory. My last CT showed just a bit of additional damage. My pulmo asked if the tables were 8 ft. apart (no) so I won't try that again.
Much depends on risk/reward in your estimation. I have lost the use of two lobes; I can breathe like this but infection, intubation and a long list of meds could set it going again so I (along with DH) am super cautious. My pulmo has patients who decide attending an important event is worth the risk. I'm just looking forward to the warmer weather. Discuss this with your MO and do only what you are comfortable with.
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Waving hello to all my sweet friends here. In pockets for stable scans and life's adventures.
DH and I go to lunch but we scope the place out first. Find a table away from bathrooms and other people and make sure server is masked. Of course you can't tell what the cooks are doing, so I guess it's a crap shoot.
Well, guess I won big today, but I don't want to overly celebrate, cause you know, karma. Ibrance Package came in the mail and wait for it…….there were 2 boxes for a total of 42 pills. What, what?? Still covered under Patient Assist until January. Early Merry Christmas…Woo Hoo.
Severe storm starts around noon tomorrow here. It's going to be a long day and night with risk of tornadoes over night Saturday. Sounds like flooding is the greatest risk . Please Be safe all along the eastern seaboard. We already have 10ft waves and the winds are gaining in strength.
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Irishlove- thanks for your response. I am so sorry for what you are dealing with, which is definitely more than what I experienced. My IBS-D was determined after a year of painful/urgent D, and a colonoscopy to rule out other causes. I'm not comfortable with the rule-out diagnostic process. I
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Just for a different perspective, since the time I was diagnosed I have been on 7 plane trips (only masked on the first 2 when it was still required), ridden on public transportation in Europe, been to the sold-out NBA All Star game (unmasked, during iv chemo), attended church weekly, unmasked and continue to work at a public library 20 hours a week. I have had a couple minor colds and a mild case of Covid over a year ago. I do not get flu shots and the only precaution I take is regular hand washing. My dr is aware of all my activity.
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Mozuke~ty for sharing. I didn’t get a flu shot last year. I only got one booster for Covid . I too am a hand washer. I can relate to not masking as well. Good to see you. Hope all is well. I have not been on a plane in years. Don’t know if I could do it with my spine pain. Which is a bummer.
my mother isn’t doing good. I talked to her yesterday and she wasn’t making sense and she told me I’m not going to make it much longer. I kinda felt Like in her way she was saying her goodbyes. It broke my heart as we spoke. I told her I loved her and she said she knew that I loved her and she asked about the rest of the family. Then her mind was done. Rambling and not making any sense at all. Like a switch was thrown. It made me so sad. She was talking in circles. It’s not looking too good. Makes me so sad.
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Irishlove, Pfizer sent me 2 packages last year at this time. Welcome gift!
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Mozuke1-Thanks for chiming in. I too lead a completely normal life at this point with MBC and am grateful to be able to do so. I do not have any other health issues, which of course makes a difference. I have neutropenia so I occasionally get mildly sick with a cold or bug and I've had Covid once but want to keep on living a full life as long as I can. I think it comes down to the personal decision as to what constitutes a good quality of life. I started working at a major sports venue this year and on opening day caught a 24 hr bug but I it was worth it for all the fun I've had. I have no scientific evidence but I think that socializing and stimulating new experiences boost my immune system. The main things I do to stay healthy are frequent hand washing, healthy diet and trying to maintain a social distance of 3-6 feet from strangers when possible.
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Micmel-Sorry for all you are going through with your mom. Glad that she knows you love her.
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Thank you so much Chicagoan 😔💐
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mel, I'm so sorry. I'm glad that she knew and could communicate the love you have for each other.
I wish I could mail my unused Ibrance to someone who needed it. I also had just had my Arimidex refilled when I stopped that. I'll ask my MO about donating it.
I will be starting Truqap as soon as my radiation is completed. The specialty pharmacy called and they're sending it to me with no co-pay on my part. I have no idea what it costs. I know the Ibrance was around $14k a month, but I never paid out of pocket for that either.
Friend of DH is coming over later and we're going to go to lunch. I may pass if I don't feel up to it. Then a couple of other friends are coming over later and will spend the night. I didn't sleep well last night so I don't know how well I'll hold up.
Love to all,
Carol
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@sunshine99 , Two organizations I know of accept unopened meds with at least 6 months remaining before expiration.
safenetrx.org (I have donated here) and sirum.org
They provide meds to those waiting for insurance approval, in the Medicare donut hole, whose formularies don't cover the prescribed drug and others who are income eligible. They don't take controlled drugs and other meds have to be in unopened boxes or blister packs (even partially used.)
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Mel, I am glad you got to talk to your mother and say what you need to, that is so important. I did the same when Mom was in hospice and I told everything I felt, mostly what a good and kind mother she was and I loved her so much. I am sorry your Mom is close to passing and sending love and support your way.
Motuke, I am similar, I lead a normal life, I do not mask either. Granted I am not in public all the time but I do ride the bus or Paratransit a lot, Cancer Clinic full of people in masks. If I have even a hint of a cough, I mask right up for the others but I typically feel a cold and it is gone next day or two.
I am steaming up a mix of beans, 2 eggs and spinach with bacon bits, tore it up into smaller pieces and will chew the 20 to 30 times recommended. Once out of the stear, was going to put cheese on but skipping that. Only thing I plan to chop next time are the beans. I will say, the hardboiled egg with the beans, spinach and bacon bits were good. I like raw spinach but if steaming will keep by belly happy, I will put up with steamed greens. Not bitter either. I added some onion strips which are really good and a bit of caesar dressing after cutting up the dish. I did take 1/2 tablet of immodium and chewed to almost nothing before swallowing. This was a couple of hours ago and nothing has happened so far, I do like the idea of using the egg maker as a steamer of other things, we will see.
Hope everyone is enjoying their day and in everyone's pocket who needs me.
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I mean, we take all these drugs and put up with pain and other problems to you know, live. And not going out isn't really living life, its kinda just existing. We also all know how quick the bottom can fall out of an otherwise stable situation. I don't want to go into the ground regretting things I didn't do because I didn't take the chances/time given to me to do them. Getting sick isnt fun and I just GOT sick with whatever nasty piece of virus was circulating the other week but whatever, being lonely and immobile has been FAR worse than any short illness discomfort. Monday Im hauling my butt onto a plane because Im not spending any more time stuck in the house now, I've had enough. At this point Im pretty sure work stress has a better chance of killing me than a random bug.
@chicagoan I just wanted to say that your picture was EXACTLY how I pictured you to look/be :)
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Mel Sorry your mom isn't doing well, it's such a heartbreaking situation. Glad to hear you both got to express your love to each other. Warm hugs.
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Sondra-that's so funny! I hope I can eventually meet you in person. I may go to London on a trip this year and if so I will see if we can meet up for coffee. Or sometime when you are visiting you mom, I'd be happy to skip up there for a quick coffee. I got to meet Aprilgirl last year when she was visiting her daughter in Chicago. She looked nothing like a pictured in person but is a gorgeous, fun woman.
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@micmel It was such a blessing for you and your Mama to have shared those precious words. I hope the time she has left is peaceful and knows she is surrounded by love. She is so blessed to have you as her daughter.
I'm a bit older and not very healthy, so home is my respite. I don't mind it so much. Years of working too many hours, raising kids while doing that and a spouse that worked many hours, have made me happy for the time we have in our home. I don't have to be any place and lately our jobs are taking care of our health. I enjoy the DGD, all the critters and we have a pool. We traveled plenty, got my bucket list trip to Bermuda, only one last thing I wish to do before I pass. I want to go home to see my family in Reading, Pa. Maybe if DH and I can find some stability in our health, we will get the chance.
Horrible weather. Managed to capture both cats and bring them in. Stay safe, in pockets for all.
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Mel, sending you love. I'm glad that you were able to talk with your mom and she was clear for a while, and could hear how much you love her.
I love being home, Irish. Lots of people asked me "where are all the places you want to travel to, now that you're not working?" And while I like little day trips nearby, I really enjoy being home, reading, listening to music, munching on snacks, organizing stuff... My dear hubby and I bought this house together and being here feels like being with him.
On the topic of protecting ourselves from getting ill (from colds/flu/covid), I mask in large crowds, like at the symphony, but not in smaller places, like the tiny coastal town I recently visited. I usually mask when I go to Target but not the little neighborhood bakery when I run in for croissants. When I flew to Santa Fe, I masked in the airport, but took it off to have snacks on the plane, given the quality of air filtration on the plane itself. When I visit with friends, it's usually just one or two folks at a time and we don't mask, but we will cancel if one of us isn't feeling well. I would say overall I'm cautious, and I do love being home, but I want to see folks and enjoy concerts. And pastries.
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I have read all your comments about the subject of "living", staying at home, being cautious, and not being too cautious. Thank you all for your insights.
I guess I am just "existing". When I compare it to my old life. I don't have a job/career anymore, so I am not contributing to society. No, I cannot say I am retired in the normal sense of the word. I am 53, so but for the cancer, I would still be working. Going to the job every day, dealing with the rat-race of the job, dealing with co-workers and deadlines. Planning my weekends to do the mundane things of grocery shopping, laundry, catching up from a week of work. I never realized how much work/a job meant to me. That was what made me, me. I also miss getting dressed up and going to social activities. I don't physically feel well most of the time now to get gussied up and go out. And, since I don't work, I don't have the money to do all that. On a budget now. And I never did travel- even when I was younger.
My post diagnosis life is just different from my precancer life. That is just the way it is.
As far as germs. I was diagnosed in the Fall of 2017. I don't remember how I dealt with that Fall/Winter season, but I do remember the next Fall/Winter 2018-2019. Pre Covid, pre-Anthony Fauci, pre conspiracy theories. That Fall I stopped going to in-person church in Dec and resumed in March- during the height of cold/flu season. And before Dec- - in Oct/Nov of that year- - I wore a mask (before masks were a thing) and elbow bumped instead of shaking hands. I just thought it was the wise thing to do, being on cancer treatment. I still think that is the wise thing to do.
It is Sunday morning here. I am over Covid. I could attend church this morning. But is it wise? I know of a couple of people- church members- that have had the flu this week, not Covid, but influenza. Illness is going around hard right now in my area. So I am choosing to stay at home and watch the service live stream.
Yes, I know I need to chill a little and get out more. But, I think, in the height of the illness storm, I should hunker down. After the cases are less, then, Yes, I should do more socially. But, yet again, when I feel sick and have a budget my options are limited. Not to mention, I don't have many friends. Much less than when I was in the working world and doing things. I lost those contacts/friends.
I don't like how my life has turned out.
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Dear Candy- I don’t want to say that you should live as I do, but as you say way you’re unhappy, I wanted to offer some encouragement and suggestions. Have you spoken with a counselor or therapist? My cancer center has counselors specifically trained to assist metastatic patients. I speak with one once a month, via Zoom. It is covered by my insurance. Are you able to add some exercise to your routine? Just this week there was a study posted here about exercise improving pain and fatigue for MBC patients. Even meeting someone for a walk once or twice a week. I’ve been a runner most of my life, but it’s only been within the past year that I joined a running club and run with others and it surprised me how much that added to my life and my enjoyment of the activity. Can you volunteer somewhere locally? Or think about something that used to bring joy to your life that you could resume, in whatever way your health allows?
I'm not trying to criticize or judge. I just wanted to say life offers many opportunities, and if you don’t like how yours has turned out, you deserve better!❤️Maureen
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Those are good suggestions Mozuke, I can take some for myself by times as well.
Laundry and dishes along with TV with cooking shows, ads pay me a little bit. Lazy day otherwise, got my paratransit booked for Herceptin on Wed. I enjoy the door to door service.
Might regret it but am trying a couple of suggestions for the spinach as I do prefer raw baby spinach. Firstly I read that chewing food at least 30 times can make it more digestible by making smaller and adding own digestive stuff from the chewing, I took a probiotic and fully loaded digestive enzyme. I also tore up into smaller pieces which may help. If I have to steam I will but enjoy salad on its own. Since I am at home for the day, will be safe enough if those don't work. We will see. If this does not work, would take an immodium before meal to slow things down in digestive track and see if that would work. If all that fails, I will resume steaming greens, I just don't enjoy them as much. Edit, seems to have worked so will continue what I did today when I have greens or really any other foods with the extra chewing. Probably will have a chopped bean and wheatbran garlic english muffin with cheese on top later.
I am in everyone's pocket and hoping for a good day for all.
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@candy-678 Hey there girl. I know exactly how you are feeling, missing your old life, not happy about your new post diagnosis life of not going out. We are all going thru this and it is what we all are facing. Many suggestions and opinions going around here. I read, and then make my own decisions whether people agree or not. I know my own limitations and have my own creature comforts staying in the house during this season. I have always done a little bit of a hibernation during flu seasons where the warm house, and creature comforts exist. @candy-678 Don’t feel you have to b guilted into taking suggestions here. I know you are only 53, and feel you should be doing more and most likely you would be were it not for your cancer. I was doing way more at tht age but was stopped in my tracks too by a sudden brain hemorrhagic stroke and 3 day coma. At 54 while cantering my horse. No accident or fall. Just a random event. Since then I was forced to give up my riding and jumping at shows, giving up my equestrian lifestyle, and learning To stay home more, do less physically and reading and watching. A lot more TV with my dogs.. then came knee replacements, and cancer in my later 50’s and early 60’s.. still walked 3 miles a day with DH on the Jersey shore boardwalks. Through my. 60’s and early 70. Then came stage IV bone mets after being “cancer Free” for so many years. Diagnosed last year at 74.🙄. So now, I haven’t even felt up to walking the Boardwalk any more and stay in more than I used to. No more running, jogging riding, entertaining,. Just don’t. Yes I hate that my life is this way… but my age and diagnosis plays a big part. I sure don’t need to see a therapist over it. Been there done that, healed moved on…. I m going to be 75 in April, though Im a young 74… I still like my warm house, DH, dogs, Budgie, neighborhood, and sometimes my adult children, 😂, so don’t I need to go to church ,get out more,wear a mask, therapy, trips, etc..etc..Yes that would be nice but…….. I just don’t always feel well most of the time and you all get that, Im sure.. 😊♥️🎄. Saying hi to everyone of you wonderful ladies. Lots of rain and very dark here today, I may paint if I feel up to it. Love you all, have a struggle free day today🩵 Yay for staying home and just enjoying your “creature comforts”
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Not doing much of anything today, we are under a snow squall watch so unsure what I want to do. I am going to pull out my cane spike though and possibly cleats as well, we'll see. I have Paratransit picking me up for Herceptin and I will go from there..
The chewing 30 times did help, no issue with raw spinach so will continue that method of eating all the time, doing Laundry, Tv playing, paid for ads, on mute. Got a slots game that is paying me on the side as well. Need to pick up my slack on the stuff I do. Surveys would be best but I am usually DQ from them.
Breakfast today was simple, cooked white rice then combined that with chopped beans and cheese with wheat bran for the ground beef texture. Dumped all on plate and microwaved 45 secs, added chicken seasoning, steak seasoning and salt. Also added peanut powder to get used up and extra protein. Did not taste any of that. Used mayo to bind everything. Somewhere along the way will use up some eggs, perhaps make pancake and sausage, I will see.
Not doing to much else, hope everyone has a good day and in pockets for everyone else.
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@moz@mozuke1 I relate to the feelings about basically grieving pre cancer life. We try to enjoy what's left and find things we can still do but cancer robs so many things. I can't ride horses or ski with my nieces and nephews now, with a long list of other things. I know it would be that way when I got older but it's like I turned 90 at 40. I'm 49 and also had to quit working. I'm "retired" but feel kind of useless and can't really do the things I wanted to do when I had more free time without a time sucking job. If it's not destroyed by the cancer and spinal cord damage, pain then it's the lack of energy and fatigue. We're dealing with a pretty crushing load just to exist another day, sitting on a time bomb. I'm trying to make a list of stuff I can do for the day and projects even though I can't hit it and finish like I want to. I'm learning what pace my body will allow. I'm going to physical therapy and trying to stretch my limits a little, strengthen what works. I can still ride my bike (much better than I walk) so I'm riding the stationary bike inside every day training for spring. I spend as much time as I can outside and. Love watching birds but this month is super cold and foggy bleh. Hoping for some rays soon. I'm starting to do art and music every day. It's been months since I felt like doing that. Apparently Wellbutrin helps me some. Hope all have an up day and if not, then comfortable rest to save up some energy for tomorrow.
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Hi all, just checking in. Had a consultation with an oral surgeon today, I need a bottom side tooth pulled. Not thrilled but it’s fractured and I don’t want it getting infected again. Also picked up candy and chocolates for a gift bag for the infusion staff, I’ll see them for chemo on Thursday. DH and I decided to go with used furniture instead of traditional cabinets for the kitchen, we found a great buffet/sideboard that seems to match a dresser we’re using for the kitchen sink but may have to drive a few hundred miles to pick it up. Not much else for now.
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I also posted this in the Bone Mets thread, but figured I copy it here, too, just in case any of you have wisdom to share around this issue:
Hello friends, I'm curious if anyone has had surgery for a vertebrae fracture? I had a vertebroplasty earlier this year, but unfortunately the bone has not healed at all and it's getting worse. I spoke with a very nice surgeon who recommended an internal bracing procedure, where he would insert a rod and some screws to keep that vertebrae in place, with the goal of obviously keeping any bone from getting into the spinal cord.
As much as the idea of surgery on my spine freaks me out, I share his concern about the continued fractured causing spinal cord problems. Ugh, cancer and the side effects of cancer are really something...
Let me know if you've experienced something like this and what your thoughts are about it. Thank you so much!
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@sf-cakes I'm sorry to hear that the fracture is not healing. I had T6 vertebrectomy as in they completely took the bone out, replaced it with a cage of cement, then rods and screws fusion from T4 to T8. The T6 bone was completely full of cancer and didn't know it until I had spinal cord compression, went numb from the ribs down. The surgery was pretty extensive and I was in the hospital for a week. I had radiation after. Anyway thanks to the excellent surgeon and team I have had no problems with the hardware or anything. That was over 2 years ago. I do have pain and it constantly reminds me that I can't bend certain ways. I have spinal cord damage because it was treated too late. Watch out for signs of cord compression like nerve zaps, numbness, muscle cramps, getting constipated easy.
The surgery and recovery were not any fun, but I have been able to keep doing at least some things I love and that is the point of it all. I had a lot of PT after the surgery. You hopefully wouldn't have so much nerve damage but anyway PT has made a huge difference for me and I'm going again to keep getting some advice about strengthening areas where I'm weak. The sign at the PT office says "medicine adds days to lives, therapy adds life to days."
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