My Husband, My Life, My Love, My Family, My Cancer
Comments
-
Sondra, when you are ready, enjoy wig shopping. As far as the Jeopardy, you can get Jeopardy full episodes off Youtube.
Not sure what I wish to do today, doing all the normal laundry, budget boosting activities and housework, waiting for digestive enzymes and some aquafor moisturizer, it is a good moisturizer and will use this on my head. I used the medication prescribed and there is already an improvement, still putting vaseline around the inside of my ear, just a thin layer and they feel better.
Cooked up some ground turkey, waiting for it to cool so I can refrigerate it, got extra grease as well due to cooking spray and the turkey. Going to use the grease for the next couple of days for using instead of cooking spray and fry up the tortillas, make different varieties. I've also seen recipes on youtube with baking torillas into a bowl which is something I wish to try as well and have a bowl of something mexican inspired, eggs or whatever. We'll see.
I do hope everyone has a good day and in pockets, in my own to get my hair trimmed and washed and add the medicated stuff. I did not wear my wig but I feel my wig is not the full issue, keep head moisturized and medicated, after the first day, it is not itchy.
0 -
I had a mini pity party this morning. I cried. I just want to be healthy again. To be a healthy 54 year old. To come home from a full-time job, manage my homelife, be active in church. Be normal. Not receive a disability check. Not even have to think about the suggestion of going back out in the workforce part time while managing side effects. Not be exhausted all the time. Not feel useless as an unemployed person collecting a Government check.
I know I have to make the best out of the situation I am in. My pity party didn't last long. But I had to post that I did have that pity party.
I/we did not ask for this diagnosis. And if given the choice, we would not have chosen this way of life.
I hope you can enjoy your weekend. I am going to do laundry, read and watch TV, and go to church on Sunday. And be grateful that the cancer is quiet, for now at least. Things can always be worse…. and will be at some point.
5 -
@candy-678 Go ahead and have your pity party…you have earned it and we all commiserate with it! Yes I long to be "normal" and to enjoy my retirement that I worked so hard to earn. My son and his family will be here next week and I so badly want to feel good and enjoy the side trips with my three grandsons. That is my pity party for the day! Thanks for letting me join yours.
@sondraf I hate fighting my thin hair everyday as my hairdresser cut it way too short this time. It sticks up because it is so dry and I am not the spikey type…perhaps I should try it though! It is too hot for wigs and scarves…ugh!
5 -
Hello All - I've had a hard time keeping up this last week due to anxiety over this liver issue, etc. I know many have directed some comments to me, and I thank you very much. I'm not necessarily commenting back, because I lost track a bit, but I do read and appreciate everything. I also read about others' struggles and wish everyone well. I've been following the disability stories. Wow, what a mess! I would think that just being stage 4 would be enough to qualify.
I got my fulvestrant shots last Wednesday and then on Thursday had the MRI for my liver (with contrast). Between the shots and the MRI procedure, I've been absolutely exhausted for the last few days. Slightly better this morning, so trying to catch up here a bit. MRI results came in yesterday afternoon to MyChart and my reading of the report says that this radiologist too, saw what he called "multiple metastases" on my liver, just like the CT reading radiologist did. He did note that the size was the same as it was in March, and not as large as the CT seemed to show last week, but that was about the only difference. What I don't understand is this is also what they saw in March on the CT, but were still not calling it metastases. For the last couple of years or more they have referred to stable "lesions" on my liver; one being a cyst, another being a likely hemangioma, and then others "too small to characterize". Well, now they're still indicating a cyst, but calling everything else a "metastases" and I don't quite know why. If it's all stayed about the same size that it has been for a long time, why is it suddenly unconditionally "metastases" in need of more immediate treatment? I also saw where this MRI radiologist said that everything on my liver was "stable", so again, I'm not sure why all the new concern and thoughts about sending me for radioembolization.
I'm sure my oncologist will have more to add to this that is meaningful for sure, but I won't be seeing him again until the first week of July. The stress and fatigue that all of this brings on is unbelievable! Thank you all for being here so I can sound off to people and not feel all alone!
5 -
Threetree- I would think they would want to biopsy the largest/easiest to get to liver whatevers. To prove that it is metastasis, and not just a benign cyst or hemangioma. If in the past they thought they were cysts or too small to characterize you would think they would want to biopsy them now. Especially before doing radioembolization. I would be asking for a biopsy.
3 -
Candy, give yourself all the pity parties you need to work out some of the stress of what could have been, I do the same from time to time, makes me feel better. If it is not 24/7 then I think it is perfectly reasonable to have a good cry when needed.
I know I post about food but I can post about disasters which were the fried tortilla shells, frying them even with meat in them did not make them more appealing, nothing but a bunch of grease since I used leftover grease from frying up some ground turkey. What I will do is use the tortillas as a filler instead and put lentils, cheese and croutons in the chopper, they will make up the ground beef texture and I will add different things and microwave, I will enjoy that more.
1 -
@candy-678, we all have to blow off steam at some point - it is human to do so. Thinking of you and in your pocket with support.
3 -
Threetree, I second the biopsy recommendation, and if they haven't grown larger it is a mystery why now the RO thinks they are metastases. I wish they would include a rationale in these reports! Hoping for some calm in the midst of all this for you.
Has anyone heard from emac?
Got outside today and fed/watered the plants and lemon tree in my little yard. My back still gets sore and tired faster, but it's been nearly five months since my spine surgery, and I'm grateful to be able to do most everything, just still being a bit careful.
0 -
Candy - Thank you for mentioning the biopsy idea. I will ask the oncologist about it when I see him next. I had thought that the scans were efficient and in lieu of a biopsy, so that a person didn't have to go through an invasive procedure. Maybe I'm wrong? The idea of anything like a liver biopsy or radioembolization just gives me the creeps. I am a real big baby when it comes to all this stuff.
SFcakes- After hearing from you and Candy, I will check out the biopsy issue for sure. Re the issue of the size of the "metastases" and why they would have to treat this, if it's indeed stable, I will have to ask the oncologist. I'm hoping he can fill in the gaps. I too wish the radiologists would give their reasoning for their conclusions. That's something that my oncologist is usually good at, i.e. filling in what you don't get from reading the report yourself. I'm wondering if they've seen new spots, since they refer to "multiple metastases". I knew there were two main spots and then a bunch of smaller ones, but maybe there are more smaller ones now? Even if there are, they are apparently "stable", so I'll just have to wait and see.
I was glad to see that you were able to get out and do a little gardening. My understanding is that that surgery you had is a real big deal, so I think you were very brave to go ahead with it, and I'm happy that you seem to be making a full recovery . When you mentioned a lemon tree, I couldn't help but think of that old folk song about, 🎵 "Lemon tree very pretty, and the lemon flower is sweet, but the fruit of the poor lemon, is impossible to eat."🎶 An old Trini Lopez and Peter, Paul, and Mary sort of thing.
I too wonder how Emac is doing and wish her well.
1 -
Candy - we all deserve our own pity party but you know what I see after almost 5 years here? Despite all the 💩 that is thrown at us, we are incredibly resilient women and after our pity party, we pick ourselves up and face the reality. I’ve seen every single one of us do just that. This living room (of Mel’s design) is where we can let it all out and then breathe a deep sigh of relief, knowing that we are not alone. The support here is priceless. You are all the sisters I never knew I had!
7 -
@candy-678 Sounds like a pity party I have at least once weekly. I see people going to work or coming home and man what I wouldnt give for the chance to commute again - who ever says that! But the things we took for granted back in the day. I think all of us can relate with the wanting to be 'normal' and productive and getting upset that we can't be, or at least not the way we were. Getting to accept that and learning about what our new job is - taking care of our bodies and our health the best we can - is still difficult after years of being told our only worth is what we produce in a monetary sense. I dunno, its something Im still working through with my therapist. But if you want to get a small part time job somewhere, that keeps you under the SSI limit, why not? Or a volunteer role that is one day a week? I know you can't predict when you will have fatigue or upset stomach, but at the same time, you cant predict when you will have a good day either :) Maybe having a small commitment to focus on and to have your brain engaged will help with pushing back all the focus on how you are feeling. I know when I am out and about the aches and pains seem to magically diminish and I can go much longer without painkillers than when I am at home day after day and its too easy to sit around and focus on how awful I feel. Just some thoughts.
@sf-cakes Youve done so well with that surgery and after! I hope you celebrate how far youve come in your healing.
@intolight A good salon product can work wonders. I had short hair cut with a choppy cut, and I would stick in a heavy duty schmoo to mess it up and stick up here and there. For the most part my hair is very fine, but lots of it, so I needed something to give it lift at the roots and dimension otherwise it just lays so flat on my head I may as well not have any (ha! fooled you, hair!). Is leaning in to that choppy look an option? Be hip and now! :)
Im starting to get really concerned about emac - I hope she is just off managing all her challenges and will be back when she feels better. She's had a lot thrown at her in the last 9 months, and the feeding tube and ice chips for the summer would have been another big one to deal with.
Im off to order cat food, start some laundry, and make jello, cut up this watermelon on the counter, and make up some tuna salad for lunch today and packed lunch for tomorrow at the H. Based on how my throat and mouth feel, I can tell the next two weeks will be back to cold tart foods and appetite loss. One more night or two of normal food I think I can handle - hubs is making creamy chicken and mushrooms in white wine sauce on mashed potatoes. I think its more comfort food for him (also, hell finish off those left overs as I need to make sure he keeps eating) but it works for me too :)
1 -
Thank you all, my peeps.
I just hated that all this came up with the LTD. Why can't they leave well enough alone. I am still Stage 4. I am still on cancer treatment, albeit it is a pill I take at home versus IV chemo. And I thank God that my scans look good for the moment. We all know that will change at some point. We all progress and get worse, there is no cure for MBC.
I hate having to defend myself. I hate that it brings up the feelings I already have about being "worthless" about not having a job like I used to. I don't want to have to go back to work, even part time. It would not be the same as before diagnosis. Working while feeling yucky, not doing the job I went to college for, but just getting ANY job to make money. Overall, I enjoy being home with my cat. And I do volunteer with the library and my church. And maybe I can look for another volunteer activity. I am getting out more, since colds/flu/Covid is quiet this summer.
Maybe they will decide in my favor. I just hate that this came up at all. That someone in an office somewhere can cause someone with MBC to be MORE miserable than they already feel.
I too hope emac is ok. She is struggling so.
2 -
I am wondering after Emac, not sure of her real name either to check on her. Hoping they are fixing things up or that she is at least comfortable, always in her pocket.
We are setting up for a week long heat event, temps between 98 F to 107F with with the humidity. I will stay home and if a trip out is needed, will take paratransit. At least the apartment is cool and I did not get rid of any fans so a cross breeze is definitely able to happen. I did turn up the temp on the AC and it is no longer leaking.
No real plans for today, TV playing ads for some cash, will be playing mobile between chores for a little cash and doing online stuff. I am not going to shop for anything food related this week, my freezer got so full I've had to tape it to keep it closed, I am OK with that but would like it less full. Need more shelf stable stuff and better organization.
Going to have some quinoa and lentils, possible meat pie in there as well, later chop in some of the ground turkey, cheese and croutons as well with some pasta, we will see. I want less junk food as well, I buy the stuff and then tire of it and the junk is the most expensive. Mini pot pies are 7.00 but there are 6 so I can stretch them with rice and beans. The chips I usually just eat up, not the best. I do enjoy the Walmart Great Value pasta because I can easily add other stuff to it like lentils, an egg to cook right on top of the frozen and add whatever seasoning is needed when plating.
Hoping everyone has a good day, thinking of Emac myself as well and in pockets for everyone needing a pocket dweller for support.
0 -
It has come to my unfortunate attention that our sweet sister Emac has passed away on June 4th. I know we’ve all been wondering about her and many have been posting about it. Someone very kind took the time to let me know she had been aware of her passing. I’m sick. She was one of our sweet sisters here and I feel devastated for such a waste of a beautiful woman. I am sending love out to her friends and family. I guess we can only say we are glad she’s not suffering anymore and no longer has cancer to fight. Rest in peace sweet friend.
9 -
Oh Mel, thank you so much for posting this and letting us all know. I am just so very, very sorry! She was very helpful to me when I first became stage 4 in January of '23. I will never forget her and her lovely presence on this board. My sincere sympathies to her family and friends.
2 -
@micmel, this is so sad, but thank you for letting us know. We will all miss her deeply. Sending our heartfelt condolences and love to her friends and family.
The Mods
1 -
Thank you for posting Mel. It is always so difficult when we lose one of our lovely friends. Sending prayers and love for her family.
2 -
Rest in Peace Emac.
2 -
Oh Mel thank you for sharing the news about Emac. 💔 to have lost our valiant sister. I pray she is resting in the arms of angels after having so many health issues here on earth.
3 -
💔💔
1 -
I am thinking of Emac and how kind she was and the struggles she had. She is at peace after enduring much difficulty. 💔
5 -
Oh Mel, that was the news I was dreading to hear. I was starting to assume she had probably passed, though she had last checked in with the site on 1 June. She had the lung and lepto mets going on so likely knew her time was short, but I would have hoped she could have had one last lovely summer. She started her Stage IV path I think a few months after I joined. Rest in peace, emac, we won't forget you.
5 -
Dear sweet emac, I pray you are in your eternal garden now. You will not be forgotten by those of us who love and care for you. 💔
6 -
so sorry to hear about Emac. No more suffering sweet sister.
Tanya
2 -
mel Thanks for letting us know. I am also sickened and saddened by the passing of emac. She kept on pushing through the past several months that were so difficult. May her beautiful soul rest in eternal peace. Fly high sweet Emac we will all miss you.💔🕊️
2 -
Ride on, emac, into that great rodeo in the sky.
6 -
This never gets easier. I'm glad Emac shared the picture of her as a rodeo queen. It makes it easier to imagine her as restored and healthy, riding into that great rodeo in the sky. I feel so sad tonight.
10 -
I was just thinking how nice it was that Emac posted her rodeo queen picture. It is a lovely way to remember her. RIP Emac.
6 -
My condolences and love going out to Emac's family and friends, she suffered a lot in the last while and I am glad she is no longer suffering. It does not mean we all will not miss her though, fly free Emac.
Today is the start of a major heat wave, temps feeling into the 100's for a good couple of weeks. At least I don't have anywhere I need to be with appointments, if I want walking, I will Paratransit to the mall and walk around. Doing laundry right now and going to run the robot vacuum after I pull stuff from under couch and off floor, do a quick floor mop as well. Budget boosting as well including doubling up on games that pay money as well, not much but every bit counts
No unusual food here, leftover quionoa and egg on top with mayo and ketchup together. Not sure what I will do later on.
I hope people have a good day, sending peace to Emac's friends and family here and in real life and in pockets for anyone who needs it.
2 -
It has been so long since I have last posted. Everyday struggles with life in general! So much to get caught up on.
I was saddened to hear of Emacs passing. Once her latest diagnosis was confirmed she did go downhill quickly. Another wonderful woman lost to this disease too early in life. Will miss her dearly. May she rest in peace 🙏
Debbie
6
