My Husband, My Life, My Love, My Family, My Cancer
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@candy-678 Couldn’t agree with you more about the Pink Ribbon Rah Rah. Good Rant👍🩵
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Hi All,
just posting to remind you that we offer a caregivers (really for partners) meetup every other Tuesday, should you have someone in your lives who may benefit. We meet today at 4pm, ET. ❤️They would need to register here:
https://breastcancer-org.zoom.us/meeting/register/tZ0rcuiqqj0vH9yFHXL9FE-RcoXHzWNjuwyW
Warmly,
Your Mods
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@micmel @sunshine99 Yay for stable scans! Yet Ihav a question regarding my own stable scans. The below was taken in Dec. does this mean all my bony mets have shrunk or disappeared ? Does this mean Nead? I get confused when I read some of the results.
IMPRESSION: No scintigraphic findings of osseous metastatic disease. Stable bone scan
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Sounds like they don’t see anything to me. But I’m not a doctor. Sounds like some good findings!!
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Sunshine - My bp goes up when I visit medical places, so maybe your husband's was up, not just because of his accident and all the driving, but it could have been those "nerves" or "anxiety" that people get at the doctor's. They call it "white coat syndrome".
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Mara - I don't think Canadian and US $$ are that far apart and those prices are ridiculous! I can't imagine anyone paying them, no matter what their financial situation. None the less, there were probably people around you who'd sprung for it.
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Scan results are stable, thankfully! They went into great detail describing my compressed T9 and the new screws/rods in my spine, which was kind of interesting but of course I already KNOW all of that, let's get to the good stuff.
A few tears of relief at the weight of wondering/anxiety being released, now time for more tea. ☕️
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THE Mouthwash:
This is it, gang. Get your oncologists to prescribe it.
Dexamethazone 0.5 MG/5ML Oral Solution. Take10ML by mouth four times daily. Swish for two minutes, then spit out. Do not eat or drink for one hour after.
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That’s exactly what I use Tina. It works great I agree! Thanks for spelling it correctly , I would have not! Welcome to the living room!
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Sfcakes -. A big congratulations on the stable scans! I too cry sometimes when I see them, because I get so freaked about them. I also do tea to relax. Great system - the news, the tears, and then the tea.
Tina - My first thought when I read you mouthwash tip was to ask if Mel was aware of this, and then I saw her comment immediately after. I will make note, but so far have by improving steadily with Squigle toothpaste (contains xylitol), mouth wash with aloe vera (Natural Dentist), and salt and soda rinses (Neil Med sinus pre-mixed packets). If this doesn't work I'll ask the onc about the steroid mouthwash. Thanks Tina!
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Happy to help when I can. Swish away1
Learned today that I've run out of hormonal and chemo options. Hope radiation and supportive care can help carry me along comfortably.
After all, why not?
Tina
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@tina2 Hi gal. I had read that sometimes you can revisit treatment plans if they "reset". Trying to find the exact terminology. If they reintroduce estrogen to the body, then they can restart prior anti-hormonal treatments. I think it was Cure-ious who posted that information in a brilliant way. Hope your MO gets going to get you to feeling better or at least stable.
@shanagirl OH hurray, it reads to me as NEAD, but I'm no expert. What a great results from treatment and in a short period of time.
Wowzer to all the gals with stable, or mightily improved scans. Hot tea, sounds good to me along with tea berry biscuits. Can't find the biscuits in FL. stores. Need to find them from the Mennonite or Amish bakeries.
Moved statin intake to nighttime. Woke up with horrible colitis pain and I have to start radiation tomorrow. Guess I'll wear a diaper just in case. Massive migraine headache and I can't take NSAID or aspirin due to this flare of colitis. SO I'm eating jello , chicken broth and sourdough bread. That's it. I'm hungry. I can take tylenol but it does not knock the headache out completely. Tomorrow will be a better day for all.
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Tina-Sorry to hear your news. Hope that the radiation and supportive care work well for you.
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Tina~I’m sorry to hear you’ve run out of treatments. I’m hopeful that radiation and care can keep you moving along. I am sending out my love to you. You’ll be on my mind for sure….
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sf-cakes Congrats on stable, music to all our ears for sure.
shanagirl Congrats to you too, sounds like crickets to me!
irish Positive thoughts your way for radiation today. Hope your belly has calmed down.
goldens In your pocket that you too have stable results.
mara Sheesh those prices, ridiculous! Glad you did enjoy the movie a nice outing with your friend.
sunshine Glad you experienced a caring tech. When I was working I always tried to treat my patients as if they were a family member. In the couple minutes you have with the patient you have to make them feel cared for no matter how busy the schedule is!
Tina2 Sending positive thoughts your way that your team will come up with a comfortable plan for you.
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I think the extra charge was for the Slimer bowl and the proton pack. My friend Tara asked if I wanted to get them after the movie, I said no thank you, too expensive.
Took my garbage can back to where it is stored outside. One thing I was pleased with for myself was that my foot caught on the ledge before the curb and was tossed forward but I was able to react and not fall. Credit goes to the PT and OT exercises. So the trip, not so pleased, recovery was wonderful, really points out what I need to keep up on. It will be better when the finish putting the asphalt to the curb area but for now feeling good about the recovery
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Tina - Wishing you absolutely all the best with whatever new treatment plan you decide to go with. Maybe if you check around, there might be more options like Irish suggested.
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Tina, I'm so sorry! This disease just sucks. I wish I had the words, but just know that you are cared for and loved.
Carol
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@tina2, we're sorry to hear this. We're thinking of you and sending you our best wishes for effective radiation and healthcare support.👩❤️💋👩
The Mods
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@tina2, so sorry to hear your news. Know that we support you and that we are great shoulders to lean on.
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Congrats on stable Sfcakes! That’s great to hear. I’m so thankful when we can share good news. I know sharing bad news is hard but the support is endless. Hugs to you.
Tina~hoping that they find something that will get you back on track. Thinking of you!
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Good evening ladies. Hope everyone is doing just fine. Tough day. I cancelled radiation appt. and DH took me to the hospital. I just couldn't get thru the day with horrible abdominal pain. CT showed diverticulitis that was severe. Started heavy duty antibiotics and got home after many, many hours at the ER. But I'm home.
I'm stopping Ibrance with 4 days left and 1 week off. Pretty sure that heavy duty antibiotics and Ibrance do not go together despite the nurse saying it was OK.
In pockets for scans and testing and life's needs.
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Irish - So sorry to hear about your very unpleasant day. Feel better soon! I agree that staying off the drugs for awhile should help.
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Irish, I’m so sorry. There seems to be no end to the joys of this disease! 🙁
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Tina - heartbreaking news. Hopefully your medical team can come up with something for you.
Mara - glad to hear the exercises have paid off in preventing a fall🎉🎉.
Irish - sorry you had a really rough day. Those antibiotics should help soon enough🤞🏻.
Still waiting on scan results from Monday🙄
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Irish, I am sorry about the trip to the hospital and glad you are finally home. Don't blame you for not mixing the antibiotics and Ibrance.
Goldens, I agree about the fall prevention. I should also walk more but have not felt like it yet tbh. PT and OT are not difficult to perform though. Up to 8 pulling myself to sitting up in the bed with the bed ladder. In your pocket for scan results.
SF cakes, I am happy for you with the stable results as well.
I am frustrated with my eating. I go all in for certain things and tire of them quickly, thinking I need to stop buying other stuff and stick to canned beans, lentils and other veggies. Don't buy pancake mix, not liking it or other stuff. Rice, beefless ground or actual beef, canned turkey, eggs, pasta and seasoning are the ay to go, just sick of everything else. Nothing wrong with the fish either and croutons to chop beans up with regular egg sandwiches on english muffin.with butter and garlic powder or spread. Just need more normal food, thinking of buying white milk and Fibre one honey clusters as well, good fibre intake as well, we'll see. I can order free on Amazon if I want to nothing with reward stuff earned as well.
I hope everyone has a good day and in pockets where needed.
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Talked with my MO today, to follow up about scan results, and also about permanent disability. I've been on leave from my job since July, and I will be officially resigning next month. I feel so many things: loss, relief, sorrow, uncertainty, exhaustion... I do believe this is the right decision for me and yet a decision I never thought I'd be making at 54. But here we are. Here we ALL are, yes? Making decisions that feel kind of surreal at times.
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I'm so happy to see the good news posted and I love the picture of Buster! Thank you goldensrbest for the shout out. I haven't had any new news and have been reading and checking in on everyone but sometimes haven't had the energy to post. I have a brain MRI on Tuesday (the 2nd) and am a little nervous. I've only had 3 infusions of Enhertu and my RO did not want me to have WBR while doing Enhertu so I have a few nerves about it.
Other than that I have been doing better. I'm still draining between 300 to 400 liters from each lung daily. I think these drains will be in for a while given the amounts but they are tolerable at this point and my brother comes over daily to help me do it as the location makes doing the bandages a challenge by myself. My breathing overall is better. I'm down to 1L on the oxygen and take it off when I'm sitting and not doing a lot of activity. Mostly I have been struggling with a lot of fatigue. I seem to sleep a lot! I had a trip scheduled to see my family in Phoenix in May and it looks like the drains won't be out by then and the pulmonologist recommended against it so I had to cancel. I at least got a credit though so I can reschedule when I am more stable.
Hope everyone has a happy and restful Easter if I don't get to say it beforehand. I think about you all daily. 🌼
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sf-cakes - I must have been writing while you were posting. I didn't realize our situations were so similar. My last working day was July 5th last year and I am approved on leave until June 11th this year. I intend to reapply for continuance of long term disability but don't expect it to be approved. I have been on SSDI since February. It is weird and I feel all of those things you mentioned. Grief, loss, uncertainty and yet the knowledge that I would not be able to return at this point to what I was doing. I intend to resign in June if my continuance is not approved. Not where I thought I'd be at 46. Hugs to you. I can totally feel where you're at.
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