My Husband, My Life, My Love, My Family, My Cancer
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Mara,I’m having a hard time. It’s making me so upset. It’s like they took half of my pain medicine away. My spine is like walking on glass. It’s so annoying. I see the other doctor used to see before she changed locations. I’m going to her 45 mins vs 10…… it’s worth it for quality of life. Thanks for thinking of me. Today. My Gabbie turns 30 years old.
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@mara51506 Ugh yes they rush every holiday in the US also, so annoying. Glad you're keeping busy as usual.
@micmel Happy 30th to Gabby, beautiful pic of her! Wishing her a 30th year of change and good health and healing this year. Mel wrapping you in a big comfort hug . Belly rubs for Theo too.
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here is my little piece of heaven and joy. He’s such a good dog. A lap dog. Affectionate funny, loving , well behaved. He’s a family dog and we are so hooked on this little guy. We love him so much ! Joy joy joy he brings to us everyday !
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thank you! I love him so very much. He’s my little guy…. The perfect dog for us. I feel lucky to have him as our dog. So lucky!! He’s a very happy dog. I’m thankful for that as well. ❤️🙌
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@micmel I didn't realize our daughter's were birthdays were so close. My baby girl just turned 30 on Sunday. I'm glad you're going to see your old doc, even though it's farther away. Is there any way to complain, formally, about the palliative care doc? My docs are all over an hour away, but I am not in excruciating pain riding in a car. I can't even imagine.
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Hi all. I cannot scroll back to comment on specific posts without losing my post. But I do read about you all and will Like or Care your comments.
Mel- LOVE your dog's pic!!!! Animals are the best. I am sorry you are struggling. And that Gabby has to go thru all this too.
I am feeling down this morning. I communicated with my sister (via email). She is soooo busy. Work. Family. Church. I just get tired reading about her activities. While I have minimal energy. I do better in the mornings. By evening I am toast. I have been going to bed at 8pm, some nights at 7pm!!!!! My mind would like to do stuff, but my body says NO. And she is 1 year YOUNGER than me!!!!!
I am tired of being tired. I am tired of all this. I try to look for the good things, but I struggle to stay in a good mindset.
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@micmel Happy birthday to Gabbie, that is a lovely picture of her. I am also sending support your way to have someone deal with your pain as well.
@candy-678 I can empathize with how you are feeling. Mornings are not bad but I am exhausted most of the time as well. Have to take breaks when doing stuff or doing chores in a tiny apartment. Like you, I would like to do what regular people do in their lives. In your pocket. I also blocked Facebook from the ability to see family as I don't need to know how busy they are. Sending support your way.
I have Herceptin today. Really cold outside, actually shut my window in living room and turned extra heat from the split AC unit to warm up a bit, other option is to shut the bedroom door. I leave AC in window because I have a ton of fleecy blankets to sleep under.
Not sure about breakfast, may just get ready and order another egg mcmuffin, bad but that is all I want. Not sure what to have later. Chores will be done after I get back from treatment.
Get results of MRI tomorrow, likely stable as no one has asked to see me sooner, I take that as a good sign. Only thing to remember is to ask for ondesetron, the vomiting tells me to take a backup at least an hour before the appointment.
I hope every has a good luck, in pockets for all.
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micmel - a very happy 30th to dear Gabby🥳🥳. Her pic is gorgeous. And your puppers is simply adorable. Our pets bring us such joy and comfort.
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Addition to previous post, was stricken with loose stool after breakfast so got myself sorted enough to cancel both Paratransit and herceptin for the day. Not sure the problem that caused it but whatever. No pain or fever which is good. Took a while as when you phone in sick, triage nurse has to take notes and ask lots of questions.
Got the appointments cancelled for today, moved up to next Wednesday instead, they wanted tomorrow or friday but explained how Paratransit has to be booked 3 days in advance. The MRI results are still happening tomorrow come hell or high water. I do not honestly feel sick either so that is a bonus. Water and immodium as needed.
UPDATE I decided to get some extra stackable containers, rubber with a tight closing LID as an extra garbage container that can hold stuff til next garbage, got 3 containers and more pantry storage and one extra recycle storage, all inside the house as well, need to see about storing the walker in the closet OR outside the back door, not really caring to keep or walk that way, used to my canes. I also ordered some mini pizzas and a couple of michelina's chicken with rice.
Got the containers because I feel like I am not supposed to store stuff out back, workers need access to the container outback when they come to work on stuff. I will remove my own stuff once I have the garbage day where I can put them out and keep storage inside but in strong sealed storage. Can also organize pantry items together or put stuff in one of them. 2 of them were cheaper because the originals I wanted for two that were smaller so that is good. I will also create a neater storage area for recycling too, make it look better and remove stuff from under the sofa and store that stuff together, we will see. Only 33 dollars in total for the pizza and large containers so that is great price for sturdy rubbermaid strength but a different brand name. Amazon pricing on storage totes is horrendous.
Did wind up having one of the mini pizzas when stuff arrived, get 8 per pack, fits well in frypan and added extra cheese, heated for 12 mins on high, rest somehow fit in the freezer which is good. The pizza was really good. Did take digestive enzyme and immodium just in case.
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seeQ~ happy birthday to your daughter.
thank you ladies for wishes.
Mara. Feel better darlin.3 -
CT showed a new lesion in the liver but the other two were smaller .. I guess I'll find out Monday if I have to change treatment or what. Kind of discouraged 😕 i know reality of it all but i was hoping to stay stable longer. The ctDNA nosedived after starting Enhertu from 95 to 0.5. now inching up again. Is slow progression really treatment failure though? None of them are cures. I'm tired of changing treatment. I'm also worried about running out of treatment options. I know that happens eventually and it not a good feeling. $&#& cancer ruining everything
In other news, I am attempting to make Tabasco sauce out of some of my peppers. Apparently you let them ferment in salt water for a week and then blend with vinegar. Anyway, a fun project. I need to start more distracting projects and somehow stop thinking about cancer 24/7. I hate it taking over my life.
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@mkestrel So sorry to read about your mixed results. I also question the rapid medicine changes and what they really mean. I think I am on my last oral med with Orserdu. I will get my next scan sometime in late November so we shall see how it goes. I am not sure whether I want IV chemo after all I have been through, and I have not had the surgeries and radiation that you have had. I have never had IV chemo. It's so much to think through. My daughter asked the question " what will it gain me?" She is right. This managing cancer stuff is getting old!
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@micmel Oh I love that Theo! He is truly living a happy life by his little smile.
@mara51506 Ugh sorry you had belly upset yesterday and had to reschedule. Hope you're feeling better today. In your pocket for getting some mental relief with stable MRI results, fingers crossed.
@candy-678 Ugh this cancer crap and all the lovely SE can really wear a girl down. I'm sorry that your sister has no clue of your world and your feelings. It is so hard to sit back some days and watch or listen to other peoples "normal" world. I'm sure you think as I often do what would I feel like in my 50's in my old body? It crosses my mind then I have to let it go because that's not my reality. We get you and we are always here to listen! Big hugs♥️
@mkestrel Sorry about mixed results, hoping you can wait a bit and see before you change treatment. Either way cancer stinks and I'm waving my magic wand in the air for all here that are on this freaking roller coaster! Hugs.
Doing ok here been busy with getting mil house on the market. Also started the process of looking for a dress for my DD wedding in May. Oh what a job that is…lol Hoping to maintain stable through then and praying I have super strength to get through all the planning etc. Oh how I also miss my super sharp mind I had before all these drugs!
Hi to all here wishing everyone a good day!❣️
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@cookie54 Thank you, I do feel better today which is good. Not too concerned re the results as my feeling is I would have been told soon after if there was progression or change in blood pool that required treatment. I will find out soon enough and allowing the possibility of anything at this point.
I was thinking about DB and SIL quite a bit yesterday and feeling irritable and a bit sad, been almost a month since she let me have it about not doing what they say. I have not called or texted her since, did wish DB a Happy Thanksgiving for about a minute and have not heard from them since. Guess I should let it all go at this point, either they call or not and consider myself on my own. I have been reminding myself that they are under no obligation to want to help me and that I just need to let it go. I am sure I could still call for help if in real trouble or want to access my trust fund they would do it. Oh well.
Pretty cloudy, noticed we have a night which dips below freezing, my goodness, better order more ice salting stuff so I can safely put out garbage or get picked up by Paratransit.
Need to request ondansetron and start taking it when I have appointments with the contrast injection such as MRI and CT scans, just to avoid the whole nausea thing. I have some anti nausea meds but they are from 2019.
Not sure what I want to have for breakfast yet, think I should take some plain black beans and one of the chicken and rice dinners I got yesterday from Walmart along with the giant bins. I may add shredded cheese to the rice dinner. Dinner should be some eggs. I should heat up eggs in the mini griddle as they do taste good coming out of there. I have also broken up a package of ramen and am storing in a small container, heat up and add to meals as needed. I went overboard when they were on sale and got 30 in an order, nuts I know but could not resist the ability to add to meals or meat or even eggs.
I've changed my mind already, need simple and small breakfast before an appointment so doing up an egg in the mini griddle, poking yolk to avoid eggsplosion and adding cheese and perhaps some lentils, not too many and just put one of the 5 million condiments I bought back when the fridge shut down. I am cautious about a big meal before an appointment.
I also came across people yapping about black bean pasta, it sounded interesting to me if I am honest, might give it a try. 1/4 cup offers many nutrients. I have not yet ordered. I am also continuing to order less than 35 dollars at walmart realizing again that if I went and only got needed stuff on Paratransit, the cost is only two dollars more for the minimum delivery fee. 7.97 for that fee and 560 for the trip there and back. I don't need to always spend 50 bucks or more if just buying some basics. I have the free delivery too.
Today both cats are hanging out in bathroom, Ava on toilet seat, Tigger in the sink. One thing I like with them in there is that I have to ensure sink is clean and dry so he does get wet or covered in soap. The sprays I made out of the toilet tank disk to keep clean are still on the ago and it actually smells good and easy to clean.
I do hope all have a good day, in pockets for everyone who needs me and my own to get rid of the persistent thoughts on SIL and DB which hold no really strong emotion for me. It is hard for me to do but telling myself they owe me nothing, knowing that I can never change SIL and that is alright and need to change thoughts about myself as well. Get more active once the corner where the treadmill is less crowded. I will post with MRI results.
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@mkestrel, I totally sympathize with you, especially about the treatment changes. I'm a step behind you, just started everolimus, though mine is paired with Faslodex. My dr has switched my treatments at the first sign of new lesions, and it just makes me feel uneasy because I seem to see others in holding patterns and I'm feeling like things are accelerating for me. Like you, I see the options dwindling.
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OK, saying this because I am upset, FUCK. Not a nice word but not a great scan.
The blood pool is gone, good for that I guess. What really effing sucks is that there is some cyst with blood which is not a good thing. Not calling a met but will have to see my person who did my brain surgery back in the day. Looks like surgery to biopsy possibly, it has grown as well so likely even if benign, surgery will likely be in order, if it is cancer, my RO would radiate the area again. Better than whole brain radiation any day of the week and better than a swollen brain any day of the week.
So history on brain, 10 cm met, big ass bugger caused seizures and a lot of swelling. My eyes would randomly feel like they would pop out, yuck. Craniotomy to remove as much of the gross stuff as possible. Knew there would be a return as part of the met wrapped around a blood vessel. Felt really jumpy at that time due to the steroids. Got the horrid whole brain radiation, I could not follow TV but got through it. This was 2016.
2018 some recurrence in same place, radiated the surgery site and that was manageable, no real issues with that.
2025 I will find out what needs to be done, done it before so although it sucks, just breathing slowly for now. It has been 7 years and RO says that if need be, she feels fine doing another radiation on the spot, I am good with it.
One good point if I can it that is that any progression has occurred where the original surgery was done. After that surgery was told to expect progression since a small amount of the met had to stay due to being wrapped around the blood vessel.
I cried and made a quick call to SIL, she was understanding and when the appointment with the dr who did original surgery will give me more info on what I am looking at and SIL is coming because she is right about me being emotional. She wants to write down what he says too.
I also requested social worker because at this point, I need support and SIL is dealing with something but did not want to discuss it on the phone, I understood and did not push. I guess they felt I was demanding of their time and did not say could or would you do this and that. Gave me more understanding. I did tell her groceries are no longer requiring them to drive me, keep the Walmart delivery coming here.
So, will be awaiting appointments for the surgeon, not sure what it all involves, I will post once I know more. I did some crying already as I am scared but telling my brain to relax for now and wait til more info is given, I imagine it will not be long either. I am following my own advice, one day at a time and no what ifs. If radiation required on that area is needed, my RO said she would do it. Would be the third brain radiation BUT I have not had radiation there since 2018 and radiation to that location only did not F me up. Only thing that may suck are steroids but whatever. If I become an in patient at the hospital and decide to walk around circles to music to alleviate any boredom, will make sure to wear shoes. got stress fractures from just walking in socks.
Got my ondensetron script though so that is good
So bad news means mcdonalds order, not too sure what I want, possibly a big mac meal. I am really hungry.
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Mara,
So sorry to hear your disappointing and scary news. In your pocket as you take things one day at a time and learn what next steps will be needed. Getting the social worker involved sounds like a good idea. Enjoy comfort food, music, movies, breathing exercises-whatever helps you deal with this new stress.
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@chicagoan You are right, been reminding myself that I have done all this before, does not mean I should not be afraid but nothing at this point is new. One day at a time and see how it goes. I did call SIL and she was good. I am over my upset of our last convo and have more of an understanding of her and DB. Will continue get my own groceries etc. She will come with me to see the surgeon once the appointment happens. Even if benign, still need to drain it out since is growing. I admit that I am surprised that if this turns out to be a met, post surgery, there would be radiation and that would be the third time. Oh well, RO did say since it has been 7 years since last radiation, she is confident in doing that. I don't have much of my own hair left so radiation will not cause too much more loss.
I also remind myself that is pure luck that all stuff that happens for me has been in the surgery site, the original spot, no spread in other parts of the brain. That is rare and I am oligometastatic as well, have not progressed from the neck down which in itself is pretty cool. Just got to relax, breathe slow and walk on the treadmill.
One good thing, they did some neurological tests and they think my muscles are strong which is good.
Thank you for the support, I am always in your pocket for what is going on with you and I appreciate the support I have here including you.
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Oh Mara, I am sorry to hear about your set back. You are good to point out some positives which is remarkable. Yes I agree that getting a social worker involved is a good next step. I shall increase my prayers for you and that your RO has a good plan which works in your favor. You have worked hard to keep your muscles strong chich is also good.
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Dear Mara
So sorry for your difficult and upsetting news. It's very scary, but you have triumphed over it before, and we will all be with you in spirit as you triumph over it again.
❤️
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Breathe… take it one day at a time. Sending you gentle hugs.
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Thank you mods and everyone. I am feeling better with the news. Will take one step at a time. Wait to find out what will come next.
Things are settled with SIL as well. I misunderstood her intentions on the last call. They are stressed. Something is going her health, she will let me know once we see each other. She will come with me to see my brain surgeon which is good. He did a great job the first time around. So should be the same
Will wait until I hear about appt etc and post later.
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Mara- So sorry to read about your news. It is good you are getting the Social Worker involved. And I am glad you and family are speaking now and pray things with them going forward will be a help to you.
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Mara - oh dear Mara I’m so sorry about your new results. Scary for sure and don’t worry about use of the f word. It is exactly right in your situation. Our sisters have given you sound advice and you are especially good at recovering from an initial outburst and then responding with acceptance and understanding. I have seen you doing that so many times. Even now, you plan to wear shoes when walking in the hospital to protect your feet! We are here to help you on this new journey. In your pockets every step of the way. Virtual hugs 🤗
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@goldensrbest You are right, I am planning ahead. There are finite scenarios this could turn into. If benign, will require draining or outright removal. Would require brain surgery and I move on. If it is cancerous then would still have some brain surgery and radiation to the location, not the entire brain. When I had the local rads, no SE from those. I will not guess which option it will be but grateful it is in a part of the brain that does not really do much, the right parietal lobe.
The other thing was that I have discovered kindness from other cancer patients noticing me crying quietly while waiting for my ride home. They were very supportive and of course my family here are really supportive. I do have good supports as it turns out, SIL is blunt but pragmatic, not emotional so she will be good to have if I tense up or cry.
Bring shoes. Use my phone to listen to my hypnosis rain as well, walk around those halls with a cane. I also mostly listened to the same song from star wars and watched the first trailer for Rogue One. I was a huge Star Wars nerd.
I've largely become more pragmatic as the shock of the news has worn off. Just have to go as normal, get the appointment with Dr Hebb, he was the bomb when it came to the first surgery. I also do not have the same level of fear as the first time around and realize that I did not freak out when a met showed up again in the same place because it was expected. Really pushing my mind to feel the same way.
I do worry about SIL because she dropped she is going through difficulties, really wish I could find out more but have to respect her desire to not talk about anything on the phone and not asking DB. I will find out later.
As far as today, I do need to get more organized. Have a lot of containers, need to figure out organization, first step is to see if there is the ability to put them in closets, keep cat food and supplies in bedroom closet. Have a container in front of of the living room closet, keep stuff for recycling in there and see about other things to store out of the way. It will keep me fairly busy anyway. Life still goes on no matter what happens. I am still lucky not to be affected at this point and I will take that as lucky.
I am in everyone's pocket, I do feel much better than yesterday, not thinking too far ahead either. The area of the brain is the same as when the big met showed up. That is very good. If I have surgery, I have already had similar as before. I will still try to get out of hospital quick if that is the case and mow down on good food. I am sure cats would be looked after by SIL and DB. Ava will hide, they have never had more than a glance of a black and white cat running away. She is nervous about strangers and growls when someone walks by my door.
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@mara51506 - Mara, just getting back to reading here after days of being too tired. So very sorry to see what' been going on with you. I am thinking of and caring about you for sure. In your pocket for everything. As @goldensrbest noted, we are all here for you in every way possible. I too think that getting the social worker involved is a real good thing. I will try to check in here a bit more often and stay informed about what is going on with you and everyone else. It's all just so overwhelming.
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Looks like I'll be moving on to a new treatment. After 3.5 years of Kisqali/Faslodex, my bone scan shows increased tracer uptake in a left rib and the parietal bones. It states that the parietal bone uptake correlates with a sclerotic mass shown on the CT scan and describes it as "limited progression". Not sure how to interpret that. Not sure how they treat parietal bone lesions other than with a new systemic treatment.
Anyone have this issue?
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