My Husband, My Life, My Love, My Family, My Cancer
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We’re home now but it was a nice little getaway.
Labs and Echo results posted to mychart but not the CT yet, arggg. Echo is up to 60%, which is normal, TM’s and AST & ALT all normal too.
Happy early birthday micmel, in case I’m MIA on the day. 🎉🎁🎂
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Illimae— glad your posted results are normal. That’s awesome!!
Loved your photos, especially the mermaid pants! Like Micmel, so jealous of your trip to the beach that’s my #1 bucket list item. Like you I grew up in SoCal and spent the summers at the beach love the sounds and smell of the shore. Really want to take a trip before my demise but can’t travel right now due to CoVid plus family responsibilities that makes it impossible to leave town. So thank you for the photos I love seeing the ocean and sand.
Will you be spending Memorial Day weekend in your pool?
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Hello all,
It's a hot day here but clouds are flirting with sunshine and rain is predicted. I've been in and out putting around.
Candy I'm waiting with you. It does feel a bit better to get it all done but the waiting for results anxiety, dread, fear is hard, so I'm here. I hope the kitty enjoyed the burger. I can't wait to share that news with my GD, she's a new cat owner lover. Covid rescue.
Runor nice to see you. You always are so upbeat and humorous. Thanks for jello tip. I take an MM RSO which has the consistency of tar and I think they may taste the same too.
Mae it was wonderful to see your mermaid pants and seashore photos. Lovely day for sure. More coming.
Mel my daughter just sent me an article about MM being a remedy for Covid 19.
https:nypost.com/2020/05/21/scientists-believe-cannabis-could-help-prevent-treat-coronavirus/?
It's in the NY Post which is not the most reliable newspaper but nowadays we're getting so much conflicting info.
I didn't read for a day and now the page has turned. Ha Ha. Time to see whose posts I remember lol. I'm sure I'm going to forget so I apologize in advance and wave hello to all. Enjoy your weekend as much as possible.
Moth good luck with taxol. That was my second chemo years ago. I think they've reduced the dosage I know its a really effective cancer killer! I take ambien and MM to go to sleep and even with them. The sleep room needs to be quiet, tv less, noiseless, lightless, etc.
BevJen I'm glad your scans are over too, well at least the CT and shots and bloodwork and stuff. I have shots bloodwork Tuesday. It sounds crazy to do a virtual meeting after going into the office. Not so convenient but maybe will protect our doctors. I'll be on pocket duty next week for the PET and MRI. That's a lot of scanning. You need double snacks.
MJHJan14 waving hello and enjoying large cakes ha ha in America!
Sondra F the cakes are gigantic. Especially at birthdays, weddings, retirements wow. Sorry about the yukky river bank. Rivers and lakes in FL are filled with gators so we just look at them. But my friends who have grown up here swim with gators. Sounds crazy but people do. Not me.
Rosie24 Sorry your losing your Dr. it's hard to make changes like that while going through TX bc you get comfortable with your own Dr. Definitely done with roller coasters. Got cured of that years ago at Kings Dominion in Va. The big bad wolf was the roller coaster that flipped me upside down and whacked my head back and forth in the seat harness. Yuck. Forever done with them lol.
Mara good job getting your red blood count up with spinach and beans. I take iron and am not consistent enough with eating spinach and black beans. Do you eat them daily? I have them once or twice a week. When I walk around after infusion I think about how surprised all the people seeing me would be to know that I have just had a faslodex shot, chemo, or zometa blood strengthening. I mean I think many people are full of so much stuff not just delicious food.
Minnie31 good to see you. I just saw you pop in. The living room is a wonderful place to be available to us.
Simone 80 first DX at 46. We are lucky to have those years. The DENOVO diagnosis is so shocking. Although, I didn't realize that I could have hope with Stage III diagnosis bc in the beginning you don't know anything. Living through it now I realize the whole thing is disease period. My DH will be 70 in June. We'd all love to see that and many more years.
Booboo I think we're supposed to have a rainy memorial day weekend which I'm happy about bc our covid rates keep raising. We never did the wait 2 weeks for down turn thing in FL. At least the rain should keep some people safe from BBQs etc. We'll get outside socializing one day soon.
Shetlandpony I agree about scan day. Well, our Dr. appts. are special. I tell my husband I'll be back in 3 hours or so from my infusion, bloodwork, appt. and he is incredulous. 8 hours without lying down or having my feet up at least is really difficult.
Karenfisedbo15 Thanks to Rosie I now got your name too. Congratulations on your retirement. I hope you get to celebrate it soon. I retired bc MBC and didn't retire as much as grieve ending my career. Ironic after all of the years working (since 15 and stopped when I was 59) I wanted retirement or days off to live this wonderful life. So now I have the days off, not exactly what I imagined.
Elderberry love your name and fruit. I only eat mine in a gummy vitamin though.
Now you all know I had to go back I used my laptop to type and phone to get all the names!
Have a relaxing weekend.
Tanya
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Dodgers Girl you snuck in there while I tried to get everyone.
Mel Happy 50th birthday! Eat a big cake.
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Hello all.
Catching up on all your posts !!!! Yesterday was kind of crazy. My cat--the one I posted about sharing my cheeseburger-- hurt himself yesterday morning. Off to the vet at 7am !!! X-ray of arm showed possible hairline fracture. So pain meds and told to rest. I have been caring for him since then. He is my baby. He is sore today but some better. Limping.
So I got a call from MO office yesterday morning too. Changing MO visit on Tuesday to virtual visit. I asked receptionist if that meant the CT was ok. She didn't know. But I don't think MO knew results yet since it was told to the receptionist to change my appt at nearly the same time I was having the scans on Wednesday afternoon. So.... I do virtual visit Tuesday morning and then have to go to office Tuesday afternoon for injections, Port flush, and labs. Silly.
So... I like to see scan results BEFORE MO visit. I usually go to Medical Records at hospital and get them before the visit (if the MO has not released to patient portal). But I cannot go into hospital now due to COVID (have to have temp check, etc at door and I don't want to do all that just to go to Medical Records). Do you guys get results at time of visit? How do you have questions ready if you have not seen, and thought about, the results? My doc visits usually last 10 minutes in person and 5-10 minutes virtually (per history of visits). So I usually have my questions thought out and jotted down on a sticky note. I am afraid even if results are stable that I will review results later from portal (after doc releases them) and have more questions that I won't get to ask. My MO does not do email for in-between visits. I can leave a message with nurse, but they seem hurried and don't want to mess with questions in-between visits. That is supposed to be what your scheduled visit is for----questions.
Nothing going on this weekend--even with the Holiday. Inside with the AC--- temps in mid 80's and humid.
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I don't like the way they treat you, candy. Try to get past the receptionist to the nurse, and leave a message saying you NEED to see your scan report BEFORE your appointment since your onc will not answer questions between appointments. If they can make your appointments virtual because of covid, they can darn well email your report because of covid. Or release it to your portal. I'd be tempted to contact the patient advocate if they give you grief about this, especially in light of the fact that they give you no chance to ask questions later.
To answer your question, I'm afraid I have to report that I almost always get the report the day of or the day after my scan. It is not an “official “ channel, but I email my onc and NP directly and say, “I completed my scan this morning. Could you please send the report when convenient?" They understand scanxiety and trust that I will be ok with going over the report by myself first. They email me a copy.
I'm sorry that your kitty got hurt. I hope he mends quickly.
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Dodgersgirl, I’ll be in the pool tomorrow for sure.
Candy, I see my MO 1-2 days after scans and get results in person. I’ve been stable since chemo, so there isn’t much to ask about but I have some general questions about tests and treatment changed should I progress to new organs, some I’ve already asked hypothetically. When I’ve had additional questions after reviewing the CT results, I send a message, usually getting a response in a few days.
Upstairs AC stopped working, gonna be a long night, might camp out in the trailer in the driveway.
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Ok, Illimae. Do you have a grill there for S’Mores?
People are asking if we are doing anything special for the long weekend. But during covid quarantine, I am with the Dowager Countess of Downton Abbey asking, “What is a Week-End?”
However, the counselor at the cancer center is encouraging me to Play, to do some non task-oriented activities with my family. What? It has been so long, I hardly remember. Life has been such a struggle for so long. But I do want to use the time I have for more than getting things done. I need to channel Illimae. Thoughts, anyone?
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Hi everyone!
Long time no see/write/read!
I hope everyone is doing as well as can be. I don't really know why I disappeared when COVID19 hit and right before that I had the flu in early March. I think I have been in a serious daze with all of this. The processing of what has and is happening in the world is lot. I am sure you all understand.
Anywho - I am doing just fine...nothing major happening. Just staying low key and occasionally visiting the WHO website for uptodate information. It doesn't seem like there are any clear sources of information - just estimates of cases, deaths, etc...We are supposed to be able to go back to work now but I am not feeling comfortable opening my little Chinese medicine practice yet. So I will continue to lay low. I got a bicycle! It is very exciting! A neighbor lent it to me and it is a nice one! So yesterday, I went on the most amazing bike ride...about 15 miles! I haven't ridden a bike in 5-6 years! It was so fun! Philly streets are quite empty in comparison to when things are actually open, so it made it mellow. Although there are TONS of people everywhere!! We are all wandering the streets wondering what the heck is going on??!!
Hope you are all coping with this new world order and that folks scans and labs are coming back no new news!! I will be lurking and trying to allow myself to get focused enough to write in more and be part of our community.
With love to all,
Philly
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Mel, a very happy Big 50! Have a lovely birthday! 50 is the new 40! Hugs
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Tanya, I eat them every day. I love them with queso and a handful of tortilla chips.
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Shetland: maybe a bike, like Philly? Bikes make you feel like a kid!
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Happy Saturday to all. Even though, anymore, the weekend feels like all the other days.
Philly- HAPPY TO HEAR FROM YA !!! Enjoy your bike. I have not ridden one since I was a kid. Would probably fall off. LOL. I can understand your hesitation reopening your business. Maybe with masks, a sanitizing schedule for the equipment, measures like patrons wearing masks and doing temp checks. Hope you can reopen with measures and get back to what you like to do.
Shetland- Thank you for your post. It isn't going to happen now (getting report before virtual visit). With the weekend and the Holiday on Monday. My appt is 9:15 Tuesday morning with my MO. I think it will be stable again. But still would like to see/review the results before MO visit. I guess I just have to see how it goes. And if I have questions, leave a message with the nurse to ask MO at their convenience. I always feel like a bother when I call there. I am stable and doing pretty good, all things considered. I feel they need to use their time for cancer patients that are not doing so well (we see all cancers in my clinic- not just breast cancer). And my MO seems hurried in my visits (virtual or in-person). Kind of like "You are good. No other questions. Ok see you in 1 month".
Quiet weekend and Holiday for me. But will just chill at home with kitty and read and watch TV.
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Candy, my weekend has been pretty quiet so far. I did wash my bedding, can only fit one blanket at a time. Tiring but got it banged out. I was just going to have a quiet afternoon here, dozing on the couch but my brother wants to take me out. Maybe I will see if we can walk in the park since they are open to the public again. Wearing a cooling cap under the wig to stay cool. Going to be looking into things I can wear to keep cool, may wear an evaporative scarf as a mask. It is going to be hot and humid for the next while.
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My brother has Had a stroke, my closest brother I have to me in my family. Always stood by my side. I adore him. His entire right side has been effected because of a blood clot in his left side of his brain . His speech was slurred and he can't go to the bathroom on his own. Nor, walk distances. He can stand and shuffle but it's effected him greatly. He is only 59. I am scared to death I'm going to loose another member of my family. I'm still grieving my father. My brother and I are very close. Except again. He lives in Arizona. We talk almost daily. I love him and I very scared something. Else would happen. This is his second heart attack in two years. Not good.
I hope everyone else is doing good.
Mae loved your photos and your mermaid pants and pics. So glad you got away. You guys are a pretty cool couple in my mind. 😃🥰
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Mel,
That is awful news for you. I hope that he can get some help quickly. For what it's worth, my mom had a stroke and recovered from it in not too long of a time with meds -- no surgery. Fingers crossed.
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Mel, I am so sorry to hear about your DB and agree with BevJen, may help come quickly for him.
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Mel, I am so sorry to hear about your brother. Praying for a good recovery. I’m in Az. I’m sure he is in good hands. Bless you and your family.
Love - Suzy.
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Micmel— sending you a virtual hug. Hoping your brother can recover very quickly.
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Mel- Sending hugs from here too. Praying your brother recovers with minimal deficits.
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Mel I'm so sorry about your brother. Sending you a big huge hug. I hope he recovers quickly and without too much trouble.
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Micmel-I just popped in to wish you a happy birthday and then saw the devastating news about your brother. It seems to be a good sign that he can stand and shuffle. I pray that he will recover his functionality through rehab. I still hope that you will find some "thin slices of joy" today with your dear ones even as you worry about your beloved brother.
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Thank you Ladies , I face timed him last night and it was noticeable for the right side. And I could tell he was struggling with his speech as well. I can’t believe this has happened. May has always been a weird month for me. My birthday is tomorrow, my dad died this month. Mother’s Day. I hope nothing goes wrong win his recovery I’d be just devastated. I’m going to be 50. He’s only 59. That’s so young anymore! Life sucks sometimes. Beautiful others. Ughhh!!! Hope you’re all doing well.
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Mel, I am still sending my prayers out to your brother and family. I cannot imagine your worry over your dear big brother. I would be devastated myself. Hoping for healing vibes for him and his recovery.
I am training to walk in warm humid weather, been out 3 times. Debating on an umbrella to keep sun off me as I have a heat rash. I do use sunscreen but may need more skin protection. Also using evaporative cooling liner under wigs and a cooling towel as well. Keeping walks short, 20 mins or less. Other than that, filling out surveys for some extra money. Just going to make a snack for that gap between lunch and dinner. I did have a good day out yesterday with DB, SIL and niece. Walked around a park and it was very nice out. Glad my circle has expanded to include them. I still am not shopping at other stores as I am not ready to, only grocery stores or pet food stores. I feel my province is possibly opening too soon and fearful of the inevitable second wave. Also saw fools in a Toronto park squished together, no distancing there. So far people are still distancing outdoors here in London, even in the park so I feel safer.
I don't blame people for getting out for a walk or park visit, playgrounds still closed but people can play tennis and golf with some specialized rules. Good to unload stress for sure. I don't wear a mask while walking outdoors but keep a mask when inside and distancing is not easy.
Hope everyone one else is doing well and in anyone's pocket who needs one.
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Mel, I've been reading, but not posting. Want to wish you a happy 50th milestone birthday, but am so sorry to read today about your brother. I so hope medication and rehab bring him to a full recovery. 59 is too young, but that may also be on his side. Big hugs!
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Mara, Bliss, everyone. Thanks so much. I am so worried that he will have another episode. I was worried about the right side when we spoke. Hopefully as you said. It can improve. Roughly how long do they go into rehab?
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Mel- Depending on the individual of course, Inpatient Rehab for Stroke is 1-2 weeks, in my experience. Then they may have continued outpatient sessions. But it depends on the deficits-- speech therapy, physical therapy. And how much help they have at home after being discharged. And, of course, insurance.
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Micmel, sorry to hear about your brother. I hope he has a complete recovery. Happy Birthday to you!
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Micmel, it seems weird to wish you a happy birthday while the bad news about your brother is distressing you. This is why stress eating of cakes was invented. Forget plates and forks. Just sit there shoveling handfuls of cake in your mouth and feel sober over being 50, happy at being 50, sad about your dad and scared about your brother and know that right there, in your lovely living room, we're all watching you shovel in the cake and not one of us is judging you, but loving you. I am giving you a hug that you may assign to whatever emotional need you have at the moment. (and, you've got some cake on your chin...) Love.
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Morning all. I was up at 5:30 today. Cat up and moving and I was awake, so might as well get up.
Happy Memorial Day to all. Some will cook out. But probably not too many parties, I would guess. I am staying inside the AC today. Just cannot tolerate the heat anymore. Today to be sunny and mid 80's and humid with a chance of thunderstorms. Plus, living by myself, I am not going to cook out for 1. So a day of TV, book, and checking in with you all.
Happy 50th Birthday to Mel !!!! With your brother and all, I hope I don't upset you. I hope you have a good day.
So I am going back and forth on the scan results issue. I have my MO appt tomorrow morning, scan done last Wednesday afternoon. First I think, all is ok or the MO would have called me. Then I think, maybe there is progression and she didn't move the results to the patient portal because she doesn't want me to see them until she talks with me. Then I think, maybe she hasn't even seen them herself-- she had Thurs and Friday off, I think, then the weekend, then the Holiday. They are probably ok. I was stable 3 months ago. I don't FEEL any different. But I am getting nervous.
I am glad I have you guys and Mel's Living Room. I have not voiced any of this to anyone else. No one "gets it" like you all. This cancer can really be lonely and such a private battle.
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