My Husband, My Life, My Love, My Family, My Cancer
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mae, that's amazing!!! How special! This city girl gets to see skunks, raccoons and the occasional coyote in her 'hood.
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@micmel Oh I'm sorry how that must have hurt so badly stepping on that rope. Yeah you've been living with a cancer body for some time and I find it amazing how you keep going and supporting all. You know sometimes crying is the release we all need. Sending love to you, family and adorable Theo.
@illimae Sweet pic of mama and babies. Thank you for the uplifting photo. Hope you are well and enjoying your beach bar.
Waving hello to everyone. Hope that everyone is having a pain free day as possible. I second the comment made to @emac877 about being too soon to move on to another treatment. Repeatedly it's been posted that treatments can take more than 3 months to begin to show improvements in our bodies.
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Had a decent night sleep. Taking a rest day today and doing some money making things. I am clever in finding those both online and in my own banking which helps a lot for me not to sneak into my bigger savings account and live off what I am paid which I quite enjoy doing. I am still playing small mobile games as well and earning grocery money at my local store to pay less. I've paid 17.00 this month in groceries out of my own pocket and still have a ton of groceries. Just a smarter ways to run things. Although this is a rest day for exercise, I must say my bridge pose is getting higher and higher done on the bed, just the right muscles to push me up if I was on the ground for some reason.
Other than those things, laundry and deciding breakfast as well. I am craving something sweet so I think I will make another pancake bread with chocolate milk, 1/4 cup beans, cheese and wheat bran chopped up and mix it all together with one egg. Lots of nutrition and add butter and syrup. I limit the syrup to once a week to avoid too much sugar. Sort of a more nutritious pancake. Tonight may be a bowl of soup noodles used for pasta, chopped beans and spinach and bran to get the correct texture. We will see.
I am in everyone's pocket who needs me sending love as always and I hope everyone has a relaxing Sunday.
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Good morning everyone. @shanagirl has been on my mind. Has anyone heard from her since her visit to the ER? I hope she is resting well and that her hearing has been restored.
Forced myself to go outside (blazing hot even at 9 a.m. here in FL) and clean two bird feeders. We had a heavy storm and the seed was wet and nasty. I don't want to loose any of the flock to sour, spoiled seed.
Sometimes we do need to really advocate for ourselves and I'm learning not to be a people pleaser. I ordered a chicken dish and it was lukewarm and slightly pink. I returned it to the manager who argued with me that they temp. check all the items. I said no thank you I want something else. He tried again and I was more forceful. I won my battle. Same situation with the Dr. that did the spinal tap. I had one before, easy and no pain. This one was very painful, with lots of shots for supposed numbing medicine and two tries with pediatric needle to get fluid. I started shaking terribly and he said you really have a tight back (repeatedly said this) before finally and grudgingly (tone of voice) offering IV meds (Versed and Valium). You know how you try to be tough, well it was too much pain for me to handle. So I said yes. Of course he had to step back and lose time as they had to hook up heart monitor wires and administer the meds. I guess this annoyed him, but I stood my ground!
Hope everyone has a good and pain free day. In pockets for all in need.
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Irishgirl, I had a doctor tell me a long story of how his brother advocating for his mom saved her life. He then proceeded to tell me that if a doctor balks at you when you do this, run. Get another doctor. That is why they became doctors, to fill a patient's need. This was after he "bumped" me ahead of 100 people waiting for cataract surgery (because of Covid.) He believed in my need after I advocated for myself to get this done before I moved away (I was also 10 years younger than the average age of cataract surgery, and a Stage IV cancer patient.) He had to do this twice after I ended up in the hospital instead of getting the first surgery. I think of that story often, and I now advocate for myself any time I need it. You are worth the care you need. I pressed and begged to get my mini oxygen concentrator, but it finally worked when others told me it would be impossible. In the end, it only matters to you. The nurses and doctors will move on, but you have to live with your needs.
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I find it real difficult to keep up with this thread and everybody on it, plus I've been off the site for awhile. Now I see that many are worried and asking about Shanagirl. What happened and how is she? Has anyone heard from or about her? Thanks all.
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She is doing ok. Just has issues with her blocked ear, one of them. She usually checks in daily but hasn’t for a few now. Don’t worry about keeping up with the thread, just pop in and say hello and let us know how you’re doing. Good to see you
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Thanks so much, Mel. I am going to assume that she is generally OK, and will chime in when she can. I do really like and appreciate this thread, but cannot possibly keep up with everyone everyday as so many of you do! It's amazing how so many of you are able to do that. Good to "see you" too.
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Popping in to say HI.
I used to keep a paper next to my computer and jot down your names and info—- my "pocket duty" list. I have not done that in a while. I am sorry. I just got overwhelmed with all the troubles you all have, plus my own issues. I do read here every day, and hate to read of everyone's struggles.
I get my scans Oct 11, with seeing my MO Oct 20. Starting the countdown. Getting nervous. I have been stable on Lynparza for almost 2 years. I know that can change at any time. I am also going to see a new MO. I go to a cancer clinic with 5 satellite centers. There is a new center open that is closer to my home- - will shave 30 minutes off my drive (one way). My current MO does not have office hours at this closer center, so I will have to be assigned to a new MO. I have not met him yet. My MO says he is good. She also said I could come back to her again if I wanted— but I cannot have both of them at the same time. The computers sync, so she can see my records from the new office.
Covid has been surging in my area again. So I am staying home from in-person church and watching the online stream of the service. Some of the church people thinks I need to continue in-person services and have given me their opinion. That bothers me. I am just trying to do what is right for me. I do miss church, but I don't want to get sick. I feel yucky enough the way it is- - GI issues on Lynparza, the fatigue, etc, etc - - I don't want to be sick with Covid too.
Anyway, you all are still my Peeps, and I love Mel's Living Room. I wish you all were "real" and I could come over to the Living Room and you all could validate my thoughts. Hugs from here.
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Well, after a poor night's sleep and worrying about this procedure, my appointment was canceled. We were on our way and I happened to see I had a voicemail from the gastro department of Scripps. Someone was out sick, so the motility appointment will have to be rescheduled. Sigh…
At least we found out before my DH dropped me off and drove away. They'll give me the "first available" appointment.
Happy Monday.
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Carol, I am so sorry your appointment was cancelled. I know how important this motility study is to you. Praying you will get another appointment quickly.
Candy, good morning to you too! I am sorry you have to change MOs but praying it will be a good switch for you. I think the closer office will be worth it. Also praying your meds continue to do well for you. You wanted someone to validate your thoughts, so hear goes… As to church, I sadly stay home also. Many people are just not careful with being sick around others and I agree you should not get Covid on top of your daily struggles. I really crave church fellowship but I now have the added burden of my mini-oxygen machine which I know others do not want to have to hear during the service. It is a bit loud and annoying. So I stay home and worship as best I can. The plus is I can pause it if I need to dash away for a few minutes for my morning "routine" or add a cup of tea.
It will be cooler here in Colorado Springs this week. The mountains around us, including Pikes Peak, received snow last night so winter is on its way although I think it is supposed to warm up again at the end of the week. There is still some minor work to be done on my patio covering so I hope they can finish soon.
Have a good week dear sisters.
Chris
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Candy, Unless you asked the opinion of others, they should keep it to themselves. Church attendance is wonderful, but your health comes first. The nerve of other people thinking they can decide what's best for someone else! It's especially true when the illness is invisible. You know what's best for you.
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Candy, in your pocket for scans.
Sunshine, I am sorry about the short sleep. Never makes for a good day but yes it was lucky DH had not left yet. In your pocket with calming thoughts.
I am planning the mail check today, braving the regular bus. The ground is level, just dirty and the path to the bus stop is easy. I don't care if I have to pay, still have my smart card if the trip happens after two. I am going to book a couple of trips this week, one to the mall for a walk and another for the same reason at another. Laundry is already done. Unsure if nurse calling today but I am not staying at home. I am fine at this point and need to get out, going stir crazy and still need to walk a bit.
I also earned enough with surveys and games for a free McD breakfast which was nice. Laundry almost done and we will see what happens. I have also started to put away any money I don't spend on groceries to roll over to the next grocery period. I have a general 25 or 30 per week as most of the stuff is cheap to get. Peanut butter, mayo, eggs are the priciest but it is still pretty easy when I do the surveys and stuff to offset the cost. That kind of thing and laundry really make me happy.
Hope everyone has a good day, pockets as always for anyone who needs me.
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Hello lovelies ~ I’m sorry for the crap we are all dealing with. It really sucks being a hamster on a wheel. Today is 9-11. I’m reflecting on all those people lost for no reason. Go to work get blown up. I still am angry for that. Innocent people taken from families. 22 years is long ago. But it still feels so awful. I may be sick, but for now I’m alive. Those poor families re live it over daily.
Candy~ do what you feel is right! Your health takes priority for sure ! Glad to see you.
intolight.~how long did it take for princess to use the stairs ! Those little legs. I worry for stairs. Does she do good now? Do you have stairs? Do you have any pics of her as a puppy?
sunshine~I’m sorry your appointment was canceled, it’s already hard enough for us to even go to endless doctors appointments anyway no less cancellations on top of it.
Wrenn~always good to see you. Hope you’re doing well.
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Mel, our Princess has really long legs so stairs have not been a problem for her. The picture I posted before of her with my daughter show her long legs. I will post it again. We do have stairs. The inside stairs are carpeted and she has no problems with them. She hesitates to use the outside wooden stairs and stumbles a little using them, but they are new.
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Mel, I don't have any good puppy pictures of Princess. Here is one with my granddaughter. I will keep looking. Perhaps my daughter can send me one.
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Such cute pictures!
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Theo has shorter legs it seems !
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Loving the dog pictures, a good way to cheer up for sure. I am disappointed because I could only walk to the bus stop but felt exhausted and did not want to chance it. I believe it a heat intolerance causing the issue and I forgot water. I was smart enough to go into the little pharmacy nearby, They let me restup and I bought a pop to cool down and sit. Got home safely. When it is less busy, planning to walk up and down the next street over with an umbrella and see if that helps. It is not hot or humid today but my body protested so I listened to it. Think I will stick with 5 min walks up and down the street and more of the treadmill. Bring water and just not give up. I did not lose balance this time which is a step in the right direction. Also might have a granola bar before the trip as my hand was shaky as if blood sugar was a bit low even with breakfast.
Edited to add that I should look on this experience as positive because I actually went out and tried, yes I exercise at home but need to go outside. Looking outdoors, five mins or so to start or go around a couple of streets, work my way up to what I used to do, still use the paratransit but remind myself to book the trip.
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Hello all you great ladies (and lurking gents?). Covid is really on the rise, so I support church services from home. Judgy people should not be judging. I bet that's why some medical services were cancelled. In pockets for scans and support for all in need.
Love the pics of granddaughter and puppy and dear Theo.
I'm gonna get a bit personal with some mental health issues and if you are uncomfortable and struggling, please pass this bye.
I have always been a very strong woman, no choice due to horrific and un-imagineable abuse from father. Mother was ill. When I was diagnosed with MS, it was tough, lost my career, had to do chemo. Handled it. When I was first diagnosed with b.c., it was difficult as I had lost 5 women in my family to this disease. Got thru it. Then stage 4 in March. Shocked, as I'm sure we all were, but got busy with treatment plan. And then, half way thru June my whole mental health went to hell, along with major neuro symptoms. It's been almost 4 weeks since I started an anti-depressant (Zoloft) taken at lunch. Not seeing much if any difference. I sit in a chair and count the hours between awakening and bedtime, when I can take Atavan and gabapentin and just sleep 8 hrs. It's my only break from physical and mental illness. I am not suicidal, but do have ideations. I've called mental health lines, either don't take Humana (shame on FLorida Cancer Specialists as they take Humana for oncology), or don't return my call. DH is aware and watches/talks with me. I am on a break this week from Ibrance and I cancelled my Flurvescent and Zometa infusions last Thursday, since it was one day post spinal tap. Waiting on MO visit Friday to go over spinal tap results. I choose not to look into portal since I'm already overwhelmed. Can anyone relate to this, share how you improved??
Thank you
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Hey there everyone!♥️
HOME FROM HOSPITAL
So yesterday I came home from the hospital after being admitted on Tuesday. At the suggestion of my neurologist, I went to the Emergency room. They wanted to treat my sudden hearing loss in my right ear but I think they were obsessed with my vertigo and balance issues that accompanied the loss of hearing.
They knew I was previously a survivor of an “Intracranial Hemorrhagic Stroke” resulting in a 3 day coma and Intensive care that happened in 2005. I was actually treated back then at this Hospital. I don’t know how I did survive that stroke with no deficits. The hospital is well known for their treatment of all kinds of stroke successfully. So after dealing with my hearing loss they totally focused on my cardiac health, with so many tests…….. MR ANGIOGRAM HEAD WITHOUT CONTRAST, MR ANGIOGRAM NECK WITH CONTRAST-Evaluation of the internal carotid arteries.
Just prior to all these tests I was seen by an extremely thorough and very caring young ENT PA. He looked in the ear and said the whole ear drum was blocked with ear wax. He got most of it out which resolved most of the hearing loss in that ear. He wanted me to follow up with an appointment with an Otolaryngologist to use any specialized equipment that would be used to completely clear the ear. He checked my good ear and said it was completely clear and he could see the ear drum. He told me tht he wanted to get me admitted to stay one night for an MRI, which ended up being 2 nights and other visits from a Neurologist brain oncology dr who wanted to test for brain tumor. I did the MRI with that mask that’s been spoken about on this forum. If I knew they were going to put the mask on me I probably would have been a nervous wreck, but I had been given a shot of Ativan in my IV, and when the tech put the mask on, I felt unfazed by the whole thing… And the whole stay made me feel relieved that I am stable and all my bloodwork is normal. My only issue was that in the morning I woke up with a massive headache and they gave me a migraine pill which caused me to vomit forcefully on the floor next to my bed. I tried to get up to make it to the bathroom, but brought up all the water I had been drinking to hydrate myself. I don’t know why I vomited so forcefully but I do know I had gone 2 days without coffee, so maybe the headache was from coffee withdrawal. I did feel much better after I vomited. The nurse told me those migraine pills can cause that side effect…….so I don’t know, but I am home now and glad to be back with DH and my puppies who were so glad to see me.😊🐾2 -
Shanagirl - What an ordeal, to say the least! Glad to hear that it might just have been the ear wax problem. Glad to see that you are home and on the mend. Rest well.
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Just finished reading 130+ posts to “catch up”. Sorry I can’t reply to everyone
had a moment and wanted to say hello.
I am still in a rehab facility. SLOWLY improving all while off chemo. Can’t be on chemo while in a rehab facility as Medicare won’t pay for treatments. They expect the rehab center to cover the cost. So every new ache or pain I wonder if that’s from cancer running wild. Sigh
Last week my dad passed. Burial is tomorrow.
Hope to be back
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Shanagirl, sorry about the vomit, glad your ear was cleaned out, should definitely help out your balance and glad you are back with DH and your furry family member.
Irishlove, I have not been through the abuse you had to go through and that makes me sad but glad you are dealing with it. When dealing with it all. I understand what you are saying about not actually wanting to die but having ideations because I go through them too. They got worse after my Mom died and I had to sell the condo we bought together. I was upset that I did not get to go with her. When that subsided, other things started happening health wise as well and when those things happen, I allow myself to go through the tears and the terrible thoughts. Those periods are shorter in time but I allow them because I come out lighter. I have not told DB or SIL because I am not looking for a pill fix and SIL believes dementia may be in my future. I ruled that out for now because no MRI has been done yet. I have started thinking about good things I did instead of the bad. I fell down at home a few months ago, I was able to call 911 and get some services. Today I could not do a whole bus trip, rode the bus home and was happy to get out. I try to find positive thoughts to fill the negative ones. My brain loves the I'm tired routine as soon as I start to get out, I say I am not tired in my head, I can walk and that helps me continue. Perhaps, the answer is to stop for a rest break or drink along the way. I keep occupied finding solutions to making things better. I don't have a social worker anymore and I feel pretty good mentally. Just getting my body to catch back up is my next mission, I believe it can happen. I don't mind the cane at all because the walking feels good.
In my terribly long winded speech, what helped me with my own suicidal ideations that eventually intrude, I consciously counter those thoughts with positive things that have happened or even as simple as listening to a song I remember. Helps a lot. Don't worry about talking about what you are struggling with, we all have struggles some physical and some mental and different ways to handle these things. We listen and do our best to help, please remember that.
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@dodgersgirl I am so sorry for the loss of your father. Please keep getting better to be able to leave rehab. My heart is with you.
@shanagirl So very glad to hear it was ear wax and boy did that hospital take good care of you. Migraine meds can make me sick in my stomach, but that new nasal spray for migraines does not and it clears the headache completely in less then 30 minutes. I know you are happy to be home in your own bed with DH and pups loving on you. You are truly a survivor after reading about your stroke history. Keeping you in my thoughts and prayers.
@mara51506 Oh that is heart rendering to hear about your Mom and how you really overcame alot. You are truly an inspiration and thank you for your thoughts and ideas. Positive thoughts are a bit hard to come by at the moment, but I see how you have been able to counter your mental concerns. Frankly I've never used anti depressants or anti anxiety meds in the past. The neuro felt I was severely depressed and that is what is causing the head pressure, hearing loss and tremors. I haven't seen any improvement, so I'm not convinced but they say to give the meds some time to fully work. We'll see. Thanks again for your lovely, thoughtful response and I'm sorry for the loss of your Mother.
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dodgersgirl So glad to see you we have all missed you and continue to pray and wish you well. Sincere condolences for the loss of your dad. Sending you strength, hugs and prayers. I'm so sorry for all that you have been dealing with we understand the helpless feeling of not being on chemo. Praying you continue to improve in hopes to leave rehab and get back on treatment.
shanagirl Happy to see you too and so glad all ended well in the end. Sheesh what an ordeal that was! Glad you are home!
irish I have not personally gone through what you are experiencing. I just want you to know you we are always here in the living room to sit down and express your feelings. We are always here to listen. Continued prayers. Hugs.
Carol wth I'm annoyed for you! I know it's out of our control but enough already! Hope your back on the schedule quickly.
Candy Yep , you do you …end of story. It's your life, your health, your decision. People have nerve….
Lovin the pup pics ladies!
Long story short, had colonoscopy Friday and down for the count Saturday with fever and terrible body aches. Feeling better today! May have to delay treatment this week , neutrophils low and gastro dr thinks we should wait for path results. May have colitis/infection maybe from keytruda? Who knows, we shall see have to talk to MO tomorrow. Oh and now need a stool sample wondering if I am dealing with the end of cdif infection with the big D I was having…. stay tuned…
Hope we all get a good night's sleep tonight.
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Irish love, Hugs. I have been that depressed and have been dumped by so many anti-depressants. I finally found one that worked for me but there was a lot of trial and error in a long process. What helped me was realizing I was important to other people in my life. It was hard because I felt pretty useless. Fortunately I'm a stubborn woman and got through it. Don't hesitate to get a second opinion or a third. Hang in there until you find a drug that works for you.
So good to hear from others that were on my worry list. I'm glad you're feeling better and are back posting.
In pockets where needed.
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I have not been posting but regularly read this thread . It amazes me the strength of character that is shown despite bodies/minds feeling tired and weak. 2023 has been poor for me - 6 months of almost continuous UTIs ,a blood infection and removal of my port meant a 3 weeks stay in hospital and a change of chemo to weekily infusions. September and I finally feel stronger. Then along come the scans; i am waiting for results :(
I find so much comfort that others understand my situation and inspiration [ Mara] to pick myself up and keep going. Thanks Mel for sharing your living room and everyone for sharing their stories. Wishing you all the best day x.
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Shana~glad they resolved your ear issue. We were hoping they would.
dodgersgirl~I’m so sorry for the loss of your father. My heart hurts for all you’re going through. But I’m happy to see you. Hugs coming your way
Denny~I hadn’t seen you in a long time as well. So glad you’re here! Hoping 2023 ends better for you. I know life is terribly difficult for us all!
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I have been reading daily but have not posted in a while. There is so much struggling by so many of you. It breaks my heart but then I see the strength and resilience that comes through. And all the support for each other. Each one of you is so special to me and I always pray for you.
Irishlove, if the antidepressant is not helping after 4 weeks, it’s time to try a different one. I have been on antidepressants since 1988. Started on Prozac, switched to Effexor and have been on Cymbalta since 2019. There have been times I’ve also had to augment with anxiety meds too. Please seek out your PCP for help.Candy - I’m getting close to either staying home from church or wearing an N95 mask and sitting in the very back. I really wanted to rejoin the choir but we are bunched together in a classroom obviously with expelling lots of air. No can do. The new vaccine should be available shortly and I plan to get it asap.
To everyone else, I’m always there for pocket duty even when my voice is absent from this living room. HUGS🤗🤗🤗
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