My Husband, My Life, My Love, My Family, My Cancer
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I totally would go, if the onc gave you the go ahead. Start packing! I would be heartbroken as well not being able to go after how excited you were. Rest when you need rest. Your body will let you know. Pop that tamiful and bring those antibiotics!!! Have a blast. Don’t forget that! Hugs to you sweet woman
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Philly, if you feel like doing the journey, you’ve got effective meds and you’re confident you won’t infect others then GO
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okay thank you thank you!!!!!! 🙌🏽🙌🏽🙌🏽🙌🏽🙌🏽🙌🏽🌸🌸🌸🌸🌸🌸🌈🌈🌈🌈🌈🌈🌈🌈🌈
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you should go, Philly!
Here’s a good article on Coronavirus and cancer too
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Morning all.
Quiet day inside today. Cloudy, windy, and in the 40's right now with forecast for 55 today--my cozy house sounds just fine to me. I am going to "work from home" concerning the church secretary thing.
Philly- Sounds like you have made up your mind. I do want you to have a good time. You are young and should enjoy yourself. But... sorry.... my recommendation would be stay home. Positive for the influenza. To protect yourself--rest and get over this without getting a secondary illness. And to protect others.
I spoke to a friend (over the phone) a couple of weeks ago. He sounded awful-congested, wheezing with each breath. But he said "I have not missed a day of work". My thought--I didn't say it-- was, you just infected your whole workplace. And maybe there was someone there that if they got sick that could have really harmed them.
And, I had a friend call me just yesterday. She has MBC also--bone only and stable for 7 years. She was going to visit a friend, but found out that the friend was exposed to someone who tested positive for coronavirus. She decided not to take the chance. She would call them and visit over the phone explaining that she didn't want to take the chance with her cancer.
Some choices we have to make are hard.
Sorry if I upset you, Philly. Or anyone else. Just my opinion.
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No Candy I completely agree with you. Philly my concern is not for you - if you are feeling well enough to go then by all means you should go. It would not be for me but you are a lot younger and stronger than I am. But If you were dx with Flu B and it's only five days from your flight? I would really want to know what the risk of infecting other people is. I don't want to upset you either Philly and if your doctor has convinced you that you are no longer contagious when you are scheduled to go then by all means GO!!!! Again I'm just worried about you infecting other people with Flu B but i could be completely wrong about the contagious period.
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I had Influenza A (I have no idea what the difference is between A and
, and I was so sick I was worried I should be in the hospital. I couldn't eat anything for two days and then it was soup and crackers. But I am not young either (I turn 60 in July), and my immune system is (was) severely compromised, so I don't think we are in the same situation, Philly. The doctors told me there is a period where you are contagious (I think it was 5 days), and my hubby caught it even though he slept in another room and barely came near me.Anyway, if you go, have big fun. And stay safe. There is a lot of “hassle" that goes on there, especially in the airport.
Edited “hassle” to “hustle”
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SondraF- ref your question about taking curcumin: my RO and MO both told me not to take any curcumin supplements due to ER/PR + BC. Curcumin acts like estrogen.
I did a bunch of web searching. Found some cancer hospitals advising not to take curcumin if hormone positive but also found just as many big cancer centers that said there wasn’t a clear indicator that curcumin was problematic.
I read a couple of body builder web sites that talked about supplements that can prevent body builders from bulking up. Curcumin was high on the list. Since it acts like estrogen to the body, it was preventing the bulking up. That was the story that convinced me to shy away from curcumin supplements (which is disappointing to me as I had been taking Relief Factor for joint pain and it was working well)
I have been told that eating turmeric in food is ok as the overall amount isn’t much but no to supplements.
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I am so far behind in reading and posting as many here are going thru issues. I apologize for that. I think of all of you daily and keep you all in high hopes.
Moth- very sorry to read of your liver progression. Cancer sucks. Really hoping the treatment you start with kicks the cancer in your liver immediately. As someone else posted, we are all in your pocket. Sending you big virtual hug.
Illimae— hope you continue your recovery each day. 30 lbs lighter. Yeah, my MO had a discussion with me while hospitalized that I needed to stop losing weight. Sigh. It is still hard to eat. I don’t want severe diarrhea again. Food doesn’t sound good to me right now but I know I have to eat. Can’t wait til you are posting food porn pics again and I find them appetizing.
Doing a happy dance for those that have posting positive scan results— congrats!
LoveFromPhilly— hope your flu evaporates quickly so that you can do your Jamaica trip. A beach front vacation is my number one bucket list item. MO told me to go right after dx. But MO also then scheduled me a boatload if scans and tests so I didn’t schedule a trip. Still wanting to do though. Post lots of water pics for those of us who aren’t near an ocean!!
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Mel- Did I miss your scan results? Thought you were having scans on the 6th.
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No results yet. I’m still waiting !!
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Hope your results come soon Mel. Waiting is the hardest part for me.
I got results for my bone scan that continue to show no scintographic evidence of metastatic disease in the bones. Hooray! I will take continued stability. The degenerative issues in my shoulders, knees, ankles, and spine continue to worsen though...thanks a lot cancer and your ugly meds.
Next up for me is CT scans on friday, meaning the dreaded drink. Ugh it makes me so sick.
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Philly, mask up and if you feel okay enough to get on the plane. Even if you didn't test positive for the flu, I would have suggested to you to mask up on the plane anyway. And wear glasses as the eyes are another entry point. I'm going to look pretty funny when I fly to Hawaii next week but I don't really care. I"ll try to remember to have my son take a photo. \
Here are all of my plane tricks - most of which I've been doing for years anyway.
Mask and glasses
Gloves to wear until I get onto the plane to serve as a reminder not to touch my face
Disinfectant wipes to use on every surface
Neosporin rubbed inside the nose
My own blanket (I just wear a cozy scarf that can double for that purpose) and travel pillow
I'll be bringing my own food and water
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jensgotthis— my local facility has changed how they do pelvic/abdomenal CT scans. No more thick drink. Now they just have us drink 32 oz of water right before the scan and nothing else.
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my drink this time was raspberry wasn’t bad at all. It used to taste like hand lotion. They should have to drink it with us.
Mae~ glad to hear of progress youre making! Traveling in no time!
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"they should have to drink it with us" - LOL! That and the colonoscopy prep! Good times!
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Sondra here is a study specifically discussing curcumin being used in an ER+ cancer.... YMMV
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Hi Santa~I would like to see them react to being told To suck it up buttercup! I’m sorry but it would bring me pleasure to know they can in a small Way understand what we all go through. Then after we can make them wait with us. So they can see the games with our minds we play. Well no news is good news right? Or oh no they haven’t called that’s bad Guessing game. Guess which place I’m going to kick you! Doctors (some Can be Very un feeling) or cold!!! Mine isn’t warm and fuzzy ! But he is a science guy. Done me well So far, maybe I should bring him a cocktail Of Hand lotion!
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My markers came back strong and steady again. So I’m hoping the scan will follow as well! I’m feeling pretty good. Just fatigue and Ibrance sludge. I just want to have that confirmation of the scan! I have no pain. Other than the places I’ve known of. And my markers went down over a point. They have been so stable As you can see , the green top line is the 45+ range and the lower green line is 0. My markers came in at 22.3. Second lowest since diagnosis, so I’m hoping it will be ok But this waiting sucks !
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Yes-- and the wait for the doctor would have to be waiting for a week or ten days for a bus, say, on the side of a road in rural Nebraska in the winter.... so they could not only wait, but also experience, "will I live"?
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Santa my oncologist told me I don't have to have colonoscopy anymore so at least I'm off the hook for that one. My facility uses the water stuff too for CT scan. I much prefer it. In January I had scans at a different location and it was some vanilla barium crap. I had the runs the entire next day.
Speaking of the runs, I have been having a crappy (hahah pun) week of just constant liquid D and nausea since Friday. What in the heck happened! I've been on Afinitor for 5 months and have had D quite a bit but nothing like this. I am living on BRAT diet and immodium. What is this shit doing to my body. And why does it show up five months into the med. I have found that Afinitor just keeps bringing on new side effects. This last few months is chapped lips, dry skin and fingernails so thin they bend right back and split vertically. The only good thing about this drug is that it seems to be working but I've asked the doctor to lower my dose. Not having QOL when I'm this tired, queasy, very little appetite and this constant D. I've been doing okay on this med (just ok) but things have really changd the last few weeks. I'm tired, depressed and not able to eat much. But oh my I have got the best hair I've had in a long long time. I hope MO will lower this dose because I don't know how long I can do this. Have I mentioned how much I miss ibrance????
Happy trails to all of you traveling. Congrats on all of the great news and big hugs to those of us having issues. it's always up and down with this disease. Ugh.
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I am sorry you are still dealing with the big D Moomala. That really sucks.
I agree, scan results should be faster given the fact it can all be had by computer. Stress of waiting is difficult.
I am still fighting some sort of bug. Not a lot of symptoms but it does make me extra tired. Still going walking but for shorter periods throughout day. Just don't have energy for more.
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Mara,
I am sorry you are not feeling well. If you are feeling extra tired, why not let yourself rest? You are so consistent with your workouts-a day or two off might do you good. I've been adding more spinach to my diet thanks to you. I've been making this soup that has lots of spinach and broccoli-wish I could deliver some to you right now! Take care.
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hi everyone,
How are you all doing?
i am hearing a lot of anxiety around this virus. Is it affecting anyone else?
Mel - ugh the waiting sucks!! The worst part! I swear that’s why I ended up sick with this flu, because of the stress of the Petscan shenanigans.
I canceled my Jamaica trip tomorrow. It feels like the right thing to do. My body isn’t right yet with this flu and I am already knocked down. Moving my onco appt up from April first to next Wednesday to discuss “what’s next.”
Moomoola I am so sorry about the D! What do the docs say? Have you by any chance worked with an oncology nutritionist? They may be able to help you get on top of the diarrhea. Back when I worked in an oncology integrative medicine clinic, we would recommend people add 1-2 tsps of carob powder a day into a smoothie or on yogurt. Carob has medicinal properties that calm diarrhea.
Love to everyone!
Philly
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Moomala, regarding the big D, I have recently learned from experience that there are drugs other than imodium that might work better for you. Imodium did nothing for my grade 2/3 diarrhea, but budesonide has been magic! So please ask your docs for a different med to try.
Philly, so sorry for the disappointment of canceling your trip. But it seems wise. And you wouldn’t want to get stuck and not be able to get home.
Micmel, what a long period of scanxiety you’ve had to endure. Seeing that graph, I just have to believe your scan will show stable or better.
My TM went from 22 to 8 in the last month. Maybe the trial drugs are working! The first scan is in around six weeks, I think.
I have been walking a close relative through her breast cancer diagnosis and treatment. It is so sad that she has to deal with this on top of everything else (including her worry about me). At least I can use my experience to help her. It looks like stage I so far. We are waiting for the surgical pathology report. She has the same subtype I have. Can anyone say “genetic”?
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Shetland, I am sorry another person in her your family has to deal with this disease. Glad at least she is the same subtype since you will have a ton of knowledge on similar drugs she might get and offer advice on different SE she may expect.
Chicagoan, thank you. I did actually go to bed quite early last night and other than the bathroom, slept like a log. Feeling better everyday. I would also love some of that soup. My favourite meals lately have one thing in common, black beans. When I want something simple and quick, I just chop spinach very finely, 1/2 cup black beans, a handful of shredded cheese on top. I usually put a little garlic powder and taco seasoning. Microwave 90 seconds. Then I put two small spoonfuls of queso cheese on top with a handful of crumbled tortilla chips, mix it all around and eat that for lunch or dinner. I have even had this for breakfast. Sometimes I add a beef or chicken burger to it, but most of my meals are a combo of this mixture. It tastes really good. I don't even mind beans, white rice and cheese, but it must have a small amount of queso and chips as well. I will take beef or chicken burgers and chop them up (after being cooked) to make a ground beef and chicken mixture as well. So good and I imagine the beans have been good for me. My cancer clinic has not complained so much about my slight anemia. I have not yet cooked the liver in freezer. I also like to add this to a box stuffing for a different sort of taste. Yummy.
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Hi all, I’m here. Went for a walk around the neighborhood this morning and saw our local turtles (haven’t seen them in months). I’m not too concerned about covid at the moment, Houston has 7 cases out of over 6 million people, however, I do wipe down shopping carts and gym equipment in addition to normal preventative measures. I have 3 concerts coming up (4/2, 4/29 & 5/21-5/25), so far they’re on and I plan on going but I won’t be too surprised if some or all get cancelled, especially the May music festival in Vegas.
Anyway, here’s the turtles 🐢 😁
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I am hoping my harry potter concert does not get cancelled in London here. No cases here but you never know with the panicky feeling. You can feel the panic at the costco and grocery stores. I wish people would stay calm, if you are not prone to pneumonia or lung or heart issues, you would probably not be able to tell the difference between covid 19 and a cold. Immune compromised people I can see worrying but I think the general public will be OK.
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I had a lot of walking today, over a couple of hours worth with bus and getting home. Then found out shelves are emptying so went back out for a few more things. I was able to walk with heavy knapsack twice all that distance. That is great but somehow manage to trip and fall forward on a stupid half step up in my apartment. What the actual fuck. I pitched forward and landed on my stomach, skinned elbow, not sure if anything else is hurt. Scooched on my bum to the living room to get my yoga mat to get up. Obviously I need hyper vigilance on lifting feet not only outside but inside now.
On the plus side, I did not pass out and only cried for about 5 minutes.
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