My Husband, My Life, My Love, My Family, My Cancer
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dutchiris~I am sorry to hear that your father is dealing with this beast also. That’s a shit deal for sure... please know I am thinking of him and your family. I’m loud while in pocket duty also, sooo we may be both be getting thrown out of her pocket. Always good to see you.
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Mara~Hi there! Hope you’re well today. I had a very long wig like my hair. I wore it twice and it was uncomfortable. So I could see why the shorter one would work better for sure .
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Dorimak, my nausea from the brain met was every morning. It was everyday as well. I also had seizures and my eyes felt like they would be pushed out due to intracranial pressure. See your MO if you have not already seen them and ask for an MRI. My MO always asks for MRI if I am nauseated and it doesn't go away.
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In reading my father's genetic testing report, I see he has a msh2 mutation. They called this variant of unknown significance.
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I am starting to think we should all have the genetic testing done. I was tested for Braca and thank goodness wasnt positive. That helps for my DD because her risk goes down with negative result for that. But now she willl start to get mammograms when she reaches 25 because of the fact that I have breast cancer. She will Be followed every year after that. I am Glad that she will be continually checked out. Hopefully they wouldn't just tell her it's only a cyst ! I would hope they would Remove anything suspicious that shows up.
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I had at least 3 cysts in the ultimate location bc location over several years. I also had a scar there from a lumpectomy in my 20s which was dtermined to be a fibroadenoma.
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Hi all.
Philly- In your pocket as well. Abnormal MRI?? Did your onc elaborate? Praying for good CT results and that MRI result was just not accurate.
Just feeling the slightly nauseous thing (nothing new) and VERY fatigued the last couple of days. On my week off Ibrance. You would think that one would feel better being off the med for a week, but I never can tell a difference in that week. I get so tired of feeling icky. But then I thank the Lord for the "easy" Ibrance and think the next treatment might be much worse. Oh how I wish I felt good and was healthy. Tired of being tired.
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Candy~I also suffer from the ibrance train fatigue. It's just awful. That's why I take my adderall on certain days because it gets to me. I can only sleep so much. I also feel better on my weeks on with ibrance. I have noticed this the longer I take it. I am starting cycle #38. I take it one week on and one week off. I like it better this way because it doesn't give my body enough time to have solid side effects as much. My fatigue has changed a little as well, my mouth doesn't get as sore And eitherr does my tongue. It will be one day instead of an entire week!
. I begged him to tweak my treatment. I was sleeping 24-7......I was becoming severely depressed. I want to do things. Not sleep all day everyday. Today is again raining and gross. It's not as cold though which helps. I have to run out for a few things. Not excited but it will get me a change of scenery. I finally have my van back after my DD used it. She's finally gotten her new vehicle it's awesome. I'm jealous. It's a Subaru which is what I want. Lol doesn't that figure? 😜😜
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Micmel, did someone tell you, officially, to tell your daughter to start mammograms at 25? Or did someone contact her directly as a result of your cancer to advise her that she needs mamms starting at 25? Did her doctor talk to her about this?
My own daughter is 27 and no one at any point has said to me that I need to advise her to keep her eyes open and be alert to cancer as a possibility. Of course we all know it's a possibility but until that possibility landed on my head like a big, gooey glob of seagull shit, I only thought of it as a possibility that happened to other people. I am sure my daughter, despite everything, thinks the same. Won't happen to her. I wonder if an offocial sugestion, in writing, from her own doctor wouldn't carry more weight than anything her old mom has to say?
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Runor~when I got my diagnosis and had the genetic testing the breast surgeon and my oncologist, and the genetic counselor all told her she should start getting mammograms at 25. They told her specifically since her mother has it. She has to be careful to notice any little changes at all. She was told to start self examining herself regularly and pay close attention to anything suspicious. She was told that insurance would be forced to cover them because her mother had it. They were very insistent in telling her that when we were getting the results back from the genetic testing. So. Yes a doctor may be able to kick your DD into asking and making sure it happens. It’s safer that way. My doc told me that for a lump to appear the size it did. Cancer was most likely present for a year or more and I didn’t know it. So they don’t want to take a chance.0
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Thank you everyone for being in my pocket today! Scans are done. I had to drink the vanilla-flavored drink bleh!! Rumblings started pretty quickly in the ol' belly and I had many visits to the bathroom thanks to it LOL. I am trying to see the positive that it "cleaned me out" so to speak, right?
So my MO specifically said that "MRI does look abnormal. Abnormal marrow signal in the vertebral bodies and pelvic bones. But similar to what was seen on the neck MRI.." so he wants to "hedge" on being careful about interpreting it, until we see what the other scans look like. I am floating in that in-between unknown zone of "not better not worse" which is just another thing to make one feel weird. I am doing my best to stay optimistic and hopeful. I don't want to change treatments of course, like anyone else doesn't want to.
You all know the feeling and the dark cloud that is always hovering nearby of worry about progression. Just another blip on the map here in the grande scheme of things and I know deep in my heart that I am being cared for and we are all doing our best to receive the best care possible in these circumstances.
Thank you for the love everyone! I am sending it right back out there into the universe to each and every one of you.
Time for a nap now...my bed looks so inviting!!! LOL!
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Thanks for updating us Philly. Hope you get a good nap now. Staying optimistic with you.
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Philly, I am glad you will finally get some rest. I am sorry that there is uncertainty about your status. Hope that gets resolved soon.
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I had a good day. No exercise, just laundry and actually did something I would not normally do not long ago. Bought a concert ticket. It is for a Harry Potter and the Prisoner of Azkhaban movie with live orchestra playing. I had attended a similar thing with Star Wars in concert and really enjoyed it so I think this one will be good. It is not until May.
The reason this is so good for me is that I don't tend to go many places other than coffee shops, movies or grocery stores. I think this is good for me to branch out into what I am willing to do. I will be by myself but also with others and this should be quite fun. Proud of myself.
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Philly I read to late for pocket duty but praying for good outcomes and easy scan and fast results. I would’ve brought butter toffee chocolate covered almonds
Tanya
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Glad to see an update Philly - we are all pulling for you.
At least you didn't blast your way out of a scanner this week?
Mara - good for you for working to expand your horizons and try something new! Its so easy to get in a rut that is comfortable. I bet you have a great time and get out there more often!
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Thank you Sondra, I think it will be good for me too. Between that and a new wig arriving, I feel very happy today.
Philly, I am always in your pocket, with food if you are hungry, whatever you want to have. I am always hoping the best for you.
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Quick food related question I hope someone knows the answer to-
I know that pomegranate and pink grapefruit are no-nos on Ibrance/letrozole. But what about hibiscus and cranberry? Are those ok?
I want to make a simple hibiscus syrup for a non-alcoholic cocktail for the holidays and the whole pomegranate thing made me wonder. Assuming cranberry is probably fine.
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never had any issues with cranberry and the pamphlet doesn’t mention cranberries at all.
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Mara, I just want to say from reading what you post that its very clear to me you have a really wonderful attitude. You face things. You push yourself - in a kind way, for the right reasons. And you make the best of things. A very powerful combo.
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Mara~Is awesome. I have learned a lot from Mara and how to push myself more than I did before. I think she’s fantastic as well. Very sweet posting Santa!
Tanya~Hello sweetheart always good to see you honey!
Chicagoan~Welcome back to you my sweet friend. It’s always nice to see you!
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Thank you so much Mel and Santa. Both posts definitely are very sweet.
I am liking to try new things out for myself while I can. I would not want to have something happen and say to myself, this girl tried nothing new. It does not require a ton of friends to be able to give yourself new experiences. No one can provide those but me and I am going to step out of my comfort zone for something I want to do. My mother did not make me do things as I was growing up, mainly because I would not do anything unless someone did it first. I have always been that way, never the person to be the first to try. I need to hold myself to account. I want to enjoy my life, inside and outside the house, while I can do so.
I'm not so much amazing as I am determined to live well for myself. I still have to fight a lazy streak a mile wide when it comes to doing things, but I wil do what I can for now. Even DB and SIL don't know where I am going. They will be surprised.
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Yay Mara, I love to hear about your next adventure.
Philly, thinking of you and wishing for better news than you expect.
Hi to all others.
DH and I drove around today looking for his next spot to camp with friends this weekend. I’ll be home with my bed and electricity, lol. Oh and I officially applied for early retirement today, I won’t get much due to the hit I’ll take for being too young and the calculations of payout which is many more years than I’m likely to have but we’ll keep our great health coverage and that is most important.
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Mae congratulations on retirement! The health insurance is gold.
Mara you’re very strong physically so I’m sure your adventures will be well ridden.
Waving at you too Mel. Nice tree.
Tanya
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Thank you Mae and Tanya. Mae, glad to hear about your retirement and certainly glad to hear about the ability to have your benefits. Enjoy your time.
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Mae, congratulations on your retirement! I actually signed my papers yesterday, effective date 1/4/60 when I officially turn 60. I was pleasantly surprised that I get my health insurance back.. I lost it when I went on long term disability. A nice surprise and free to boot. Also available for a $3000 life insurance policy for $1 a month and no penalty if I die the day after it’s effective. Also wanted to share with you ladies about the cancer card exchange. I learned about it from a Facebook support group for stage 4 that I’m in. They will send you a $100 gift card. I got mine yesterday and it was a visa gift card. You have to apply, it only takes 100 people at a time so if it says not taking applications keep trying! They want to see that you are a cancer patient, I took a picture of my appointment cars with my name on it from my once office.
This is legit and coming in very handy at the holidays.0 -
Mea,
Congrats on retirement! I retired early also. I have never regretted it.
Lynnwood, Thanks for the tip on the gift card. I just went out there and they hit their 100 limit. I'll keep trying though.
What fb groups do people recommend to join? There are so many.
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Here is our Xmas tree. I hope more post their tree.
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Simone~Thank you for posting your beautiful tree. I absolutely love The shape. It’s stunning where you have it. It makes me happy to see how everyone does their trees, it’s a style all of its own I believe. I’m loving it! 🥰 Christmas 🎄!!!!
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Here is our tree. We put it up before Thanksgiving this year, which is a first for us. When I was a kid I remember being so anxious to get a tree and put it up, but my parents always waited until about a week before Christmas. Hoping everyone is well, or pretty well. My lumpectomy wasn’t too bad, but the incision for the sentinel node is irritated by almost everything I wear. Small problem, I know.
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