My Husband, My Life, My Love, My Family, My Cancer
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Thank you for the comments on the PIK3ca test. I hadn't read up on it until I saw that note in my chart. It sounds like another tool to use.
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what’s going on in the living room today? I’m just sitting here eatin’ tortilla chips. Feeling super lazy without seeing Mara’s step count. I did 3,400 which is my longer walk today. Had a pity party earlier but am over it now. Hugs to all
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Hi Kikomoon, it is very quiet here, it's just after 8 in the morning down here so I've just woken up. I'm glad you're feeling better now than you were earlier. I've got to get myself moving, I've got bloods this morning and an appointment with my oncologist to see when I can start back on my treatment.
Waving hi to everyone, enjoy your evening or have a good night. xxx
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It's so awesome that we have so many women from around the world here.
My day was also a lot of doing nothing and eating potato chips. I was just talking to myself and saying I need to eat better. It's hard when you have so much nausea. I just ate an apple. My good food for the day.
Kikomoon, sorry you had a rough patch. I'm sure you got more steps in than me. I do just under a mile every day.
We have a golf cart at our house, and our little doxie is obsessed. If she hears the garage door open, all bets are off. My husband wasn't here today, so I felt bad for her and opened the garage and took her for two rides. He usually takes her with him when he goes away, but he couldn't this time. I know she's sad.
Kitty, I hope you're feeling better and have gotten to see your grandson.
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Hello friends in the living room.
Beautiful lazy day here in Colorado. DD’s family flew to Chicago to visit her sister for a week. The three year old was thrilled to be flying on a plane. So…no hanging out with the grands for the next week. Maybe this calls for a little productivity?Good scan results and the RO says we don’t need to become friends. A low stress weekend sounds good. Here are the two reasons life remains good despite cancer: Napping grandson and last week’s hike. Hope you all have something to enjoy this coming weekend! (Someday I will know how to rotate photos.
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awesome iwrite great pics and good results
Boy it was so nice outside maybepeople had things to do. My dd turned 26 today. So we had a dinner and my DH made her a dinner and cake. We had a great time and had a lot of laughter. We spent the evening together and I loved every second of it. I want nothing more than my DH and my son to be close. I want it so much in my heart. I had it tonight so there is a start. Family is everything everythin
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Happy Birthday to DD and glad you all had such a good time.
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Yay Iwrite, it always makes me happy to see you post. I know things looked bleak a good while ago, so I’m thrilled and encouraged that the next thing really can turn it around. You look very happy 😁
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Its great to read all about what everyone's got going on. Not a lot here, still beautiful weather, Herceptin infusion tomorrow which is non-eventful. I will get off my butt and make something one of these days....crafts, cookies, lasagna, cake.......I think it would be fun. DH's best friend flew in from DFW to visit with him the last two nights. They stay out on the patio and drink whisky till soooo late. I'm sure the neighbors loved it. I texted him from bed last night, it's after 1am are you kidding me! He doesn't have alot of friends, but this one is really good, I'm so glad he has him.
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Kikomoon, I love the ease of the no boil lasagna and the Brailla recipe, I also add spin to the meat layers and is love by all who’ve tried it. Good for DH, sounds like he had fun.
We had to cancel the beach trip while DH’s truck is worked on but plan see see a movie today 😁
I found these for future pocket duty, lol
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Hello all. I see posts from 12-14 hours ago, would have been last night 8pm based on my time zone. I was in bed by then, LOL. Now it is 9am and starting my Friday.
Good to see the pics Iwrite.
Kittykat hope your day was ok.
Mae agreed on the M&M's being emotional support candy.
I go for my Port flush and Lupron shot today. Local, so just a 5 minute drive from my house. Nothing planned for the weekend, as always. Got my hair cut yesterday. My hairdresser gets me in first thing of a morning before it gets busy there. She wears a mask and said she is triple vaccinated. She is in a building with other hairdressers and said that a couple of the girls were sick with Covid lately. But I felt safe with her, and us 2 being the only ones in there at the time.
Monday I see my MO, the 2 hour drive trip. We will do labs and talk about the Lynparza. I am going to ask for a lowered dose due to continued nausea. We will discuss when to do the next scans-- probably December since 3 months after starting Lynparza then.
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Well I woke up feeling depressive and some nausea as well. Slept OK but still felt less than the best. Ate a small breakfast including some black beans and spinach to get the blood cells going. Also took a depression treatment as well (a half hour walk) and feel slightly better. I have a routine echo so will get a couple of walks that way as well, each one about 40 mins. Luckily these are the shorter of my appointments I usually have. Getting tired of feeling only slightly shitty to be honest. Not enough to call it a full blown disease, but enough to leave me not wanting to get anything accomplished. The nice thing about the weather though is that I actually felt a bit chilled when I set out, weather is definitely getting that cloudy November look to it. Better pull out my winter shoes and traction cleats to be ready for winter.
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Hi All,
I’m in PA visiting my family and staying with my dear sister. Mel, I am so sorry it didn’t work out for me to visit. Hoping for next visit. So glad you enjoyed your DDs birthday. And you are right…family is everything.
Anyway, I am SO glad I am able to enjoy this beautiful Fall weather. I love it here this time of year. Would move back to PA in a minute if DH would agree. But that’s never going to happen, so I’ll be content to visit as often as I can.
Mara, I’m hoping your MRI shows no progression.
KBL, I know what you mean about trying to eat better. Right now, I am obsessed with caramel popcorn. I can eat buckets of the stuff. Sugar, sugar, sugar. Oh well….I’ll try to slip in a veggie here and there.
Mae, hoping your friend is better. Is he still in the hospital?
Tanya, waving hello my dear.
Candy, hoping you are doing well. Kitty, so glad that you are at home now. Blessings..
Sunshine, I tested positive to the PIK3ca mutation. I tried Piquay, but ended up very sick from that drug. I’d love to hear that they’ve tweaked it so it’s more tolerable.
Hoping you all have a nice weekend.
Hugs from PA,
Boo
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lwrite, I love the scenery you get to see on hikes, I don't live close to anything like that but I can see that being just lovely and who doesn't love a napping baby. Precious for sure.
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Laurie, glad you are enjoying yourself in PA.
I'm more nervous lately about the MRI results because I am having morning nausea which was one of my brain met symptoms. I am trying to keep my mind occupied but I don't usually feel this way. Gonna just walk as needed and go from there.
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Boo-boo, I hope you have a great time. Caramel corn or anything caramel is my husband’s favorite. I am more of a chocolate girl, no carmel. Enjoy. I eat what my body craves. Lol.
Mara, I’m sorry you’re nauseous. I hope you feel better as the day goes on.
Candy, I hope you can get a dose reduction.
Mae, so sorry you had to cancel the trip. I know you were looking forward to it.
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mara, I hope you start to feel better soon. I'm sorry I don't remember if you've had your MRI already or if it is upcoming. Either way, I hope for good results. Either way can be stressful, right? If it's negative, there's the "then why do I feel like this?" and if it's positive, then "Oh, sh!t, now what do we do?"
booboo, I have no idea how long the test takes. Do you remember? If I can remember to let you know if I do end up going on Pikuay and how I do with it, I will. Did that sentence even make sense???
I saw a new dentist yesterday. I LOVE her. There is a strong possibility that I'm going to need a tooth extracted, but she understands the contraindication with Zometa and is going to consult with a colleague. She has a Stage IV relative so she totally gets it. The tooth is not painful and it's not an urgent matter, but it's the wisdom tooth on the top, so kind of impossible to just fill it. The last dentist I saw (not my regular perio dentist) wanted to pull the tooth, give me a super duper, never-fail, last for 100 years crown. Didn't listen to me and apparently hacked up my neighbor's gums so much that when she went to the new dentist (the one she referred me to), she (the dentist) said she'd have to wait a few months for her gums to heal before proceeding with the crown. Yikes.
Happy Friday, everyone!
Carol
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Sunshine, I have had my MRI. Hoping it is OK, will find out next week. Having an echo today so the walking will perk me up more.
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Well I am home from my Lupron and Port Flush. I mentioned I get them locally versus going to my cancer center to avoid the 2 hour one way drive each month (Lupron monthly). I go to a local infusion center that does all kinds of infusions--- antibiotics, chemo, etc. They are now doing the monoclonal antibodies for Covid. I was talking to the nurse. She said if a person gets diagnosed with Covid and are a high risk individual their doctor can order this infusion. They would come there and get the IV infusion over 30 minutes. You have to get it done early in the Covid. She said it can help, but, of course, not 100% of the time.
Then she told me of a case where the person was double vaccinated, but went to a church function without a mask, indoors, around unvaccinated people. She caught Covid. Came in for the monoclonal antibodies. But ended up in the ICU anyway.
Just reiterates why I am so cautious. I am triple vaccinated, but with the cancer and low counts, I am wary of being around a group of people. You cannot say "Hey are you vaccinated? How about you?" You know in a crowd some are not vaccinated.
I don't think Covid will ever be over.
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sunshine that hurts to read your post. I hate the dentist!!! I got brave and tried to go before my treatment and they turned me away because I had a fever! I had a fever because I was so worked up! Gosh I just had a major hot flash just thinking about it here at the infusion center had to take off my blanket and sweater. I asked my MO for some Valium so I can go. She prescribed exactly 1 Valium.
I floss like no ones business…Candy- they better put those Covid infusion peeps in a quarantine section! I agree we are stuck with Covid.
Mara- sending you hugs, good vibes,and prayers. I know it is so hard the waiting game.
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Update on our friend: Tested positive for West Nile Virus. Most people infected never know, about 20% have symptoms but only 1% have the severe case doctors are seeing with him. He’s being treated with steroids and anti-virals but recovery will take time. He may have lasting issues but hopefully gets well enough to resume his independent lifestyle without difficulty. He still can’t communicate but at least we have some answers and some hope.
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Laurie, thank you for the positive thoughts.
Candy, I hear what you say about the covid being around for a very long time. I can deal with that as long as essential businesses stay open at least.
After 1 walk this morning and two walks to the hospital and back home, I am feeling better. Gonna try and stop my thoughts going in a negative way. Far too depressive for me to function.
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Mae, wow. It’s good to know, but, gosh, that is some serious shit. The damage mosquitoes can cause. I’m so glad they found the answer.
Mara, glad the walk made you feel a little better.
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Illimae, thank you for telling us the answer to what happened to your friend. I suppose the WNV caused swelling in the brain, which caused the seizures, and this inflammation is treated with the steroids? I hope he recovers well! Mosquitos love me and I hate them.
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Mae, hope the recovery will be complete for your friend. Amazing what damage WNV can do.
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Mae- Glad to hear the doctors finally diagnosed your friends condition. Who would ever have thought the WNV! May he improve quickly with the right medication.
Mel- happy to hear you had a great celebration for your DD birthday
Mara- keep chin up as they say. Keep positive thoughts although it is very hard. My thoughts are with you.
Today I got my hair cut! I looked like a wild cave woman. Also did grocery shopping. Yuck!
I registered for the Monday meeting and I'm pretty sure I put zoom on my phone. Will find out Monday.
Tomorrow my son is out for the day. Hopefully it's a beautiful day like today so we can go for our walk. Right now I can see the lightning and hear the thunder. If in bed it would put me to sleep but it's a little early for bed.
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Yes, it was great to have something to go on, especially since doctors started talking about possible cancer and treatment, which I did not approve of, as there wasn’t a single indication of it on scans, lumbar puncture or labs. The idea that they might try some kind of chemo because they didn’t know what else to do, doesn’t sit well with us at all.
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mara: I get the anxiety. A few days may as well be weeks or months as far as the feelings go. I had a PET yesterday and am trying to not think about the results. I had a CT of my head last week to rule out other reasons for my ongoing headaches. My MO doesn't think I have brain mets because I don't have any other symptoms except a headache that comes and goes, comes and go.......I am sure he would go for an MRI if I presented something more concerning. Geez - do I have to have seizure first, or drool? I hope your news will be favourable.
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Ok, but Her2 positive...
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Elderberry, I am absolutely not questioning you or your MO’s thoughts on the matter but being HER+ is such a risk factor alone. The headache I had that lead to the MRI was a tension headache but 5 tiny spots were found without any symptoms. If you ever worry about it, it’s worth knowing for sure.
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