My Husband, My Life, My Love, My Family, My Cancer
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Between dealing with being sick ,family dynamics, medical appointments and stress with scanning. Worrying about how others may see us. Not feeling good ever.. it's a wonder we all don't go raving mad. bonkers. Some days I'm like whoa who's shit life did I step in? But we need to remember we have to live for ourselves. We need to do things to make us happy. No matter how little.
My dss had his car stolen in Alabama today. We're shocked. Can't believe it. Never had anything like this happen before. Brings me back to. People are dicks.they’ll never find it in good shape. Unreal what some will do. Poor kid.
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Mara, suffice it to say, I am angry for you, too. Both comments unacceptable and uncalled for. I too am so sorry to read how upset you were going home. I just want to wrap you in a huge hug and tell you, HOORAY for stable!
Mel, so sorry to hear your DSS had his car stolen! Yes, poor kid. And you said it right, people are dicks.
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I’m fine should be code for
This is shit. No I’m not fine, I’m giving you a graceful exit. Take it while you can or get yourass back here and be with me. With the caveat that I am not stage 4, and am imagining what you must be thinking.
N
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Thank you everyone, I am feeling much better about things. I should keep positive about the stable and not worry over the other things. I will continue to monitor portions and walk at least an hour a day but as far as telling anyone how I supplement my income, I will know to keep it to myself.
I really do appreciate everyone's words and take them all to heart. I did call a friend who was able to talk me down. I was just furious was all. I am going to take care of myself and let it go. As far as my weight, they should appreciate the fact that my digestion and appetite are back to normal. I need to worry less and not react so badly, be irritated but not so upset. If I choose to lose weight which I am, good, if I chose not to, that is also up to me.
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Mel, I am sorry about your DSS having his car stolen, that is such a violation. I hope it is found for him. You are right, people are most certainly dicks at times.
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Mara, I'm glad you're feeling calmer, and happy for your good results, you're right, it's none of their business.
I'm sorry about your dss car, Mel, the world is full of scum it seems, the same happened to my friend's son all the way down here.
Yep, " I'm fine" seems to be our default response, it's just too hard for them to deal with and we've already got enough on our plate.
Well I made it through the first week, round 2 in the morning as long as my bloods are good.
Waving hi to everyone, and I'm glad that some of you have started getting your covid vaccinations. I think we are going to start rolling them out at the end of Feb, our version of the FDA still hasn't authorised the Astra Zenica vaccine but have the Pfizer, but have nowhere near enough, we can make the other here so hopefully it will happen soon.
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Mara - so so sorry that your medical team made you feel so lousy. There is no excuse for that. I'm glad you have put yourself in a better place. We've got enough to bring us down - we don't need more help in that department. Thankfully scan was stable.
Mel - yes people can be dicks. Many years ago, when my husband was going through very serious medical/legal problems, our favorite saying was “the world is full of complete fucking assholes". Still true today. But during that time we also learned the world had an equal amount of caring, compassionate people, which is still true too. Just hope that in our walk we meet more of the later.
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Kittykat - I know so many Aussies and Kiwis up here who would love the chance to go home and see their families, and vaccinations down there will be a huge part of enabling that soon.
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Waving hello to everyone for the first time in this thread (though I've been in a few others already). This seems to be where it's at! I'm in the UK (SondraF has already very kindly been in touch and helped me understand the MBC landscape here - thank you!) and have mets in my lungs which seem to be TN (I was ER/PR+++ on primary). I'm on gemcitabine and carboplatin chemo at the moment - it's not huge fun but I'm managing ok. Just one cycle down and already driving myself crazy looking for hints it's working (as I was asymptomatic at diagnosis that's basically impossible...!) I've tried to update my signature below but somehow it never adds my new information - I'll try again....
I had my first dose of the Covid vaccine yesterday as well which is a relief. I am feeling pretty down being locked in the house for months on end *and* dealing with chemo. At least when I had it for my primary I could plan fun catch-ups with friends in my 'off' week.
Good luck to all with MO appointments coming up. I had a chat to the oncologist this morning (not *my* oncologist as she has been redeployed to the Covid frontline - !!) about side effects from my first gem/carbo, she's upping my anti-nausea meds and encouraging me to stretch out the steroids more which should help. She also mentioned that although the team at my hospital don't rely heavily on tumor markers, my CA-153 was slightly raised on diagnoses (42 I think she said?) which means it may prove to be a marker that helps for me and we'll keep an eye on it. Makes me nervous to have something else playing on my mind but hopefully it means better monitoring.
I have many good friends in the US (I did my PhD in Boston) and one of them is a doctor at MGH and has put me in touch with a friend of his who is an immunotherapy researcher at the NIH in Bethesda. I have a Zoom meeting with him next week, I think to talk about the newest immunotherapy for MBC and where it's accessible. Via my husband's job there is a chance we can move to the States if it might help my treatment - still on the fence about it, but my US friends are very keen to help by putting me in touch with specialists/doctors Stateside so I'm at least exploring. If anyone has thoughts on what I should ask the immunotherapy guru, send them my way!
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Welcome phet. As you can probably see, no subject is off limits here. We call this Mel's Living Room (after the founder of the Thread, Micmel). Come here. Plop down on the couch. And discuss anything you want.
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Good morning. I mention appreciating little things for time to time and I had to share how excited I am to eat this breakfast, it’s gonna be epic!
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You are making me hungry! Looks really good.
Welcome to our group Phet, we are a living room as Candy said as well as Mel is known to say. Nice to have you here.
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F- f'd up
I- insecure
N-Neurotic
E-emotional
I agree on the I'm fine thing. Its exhausting to explain sometimes.
My appt was much better than I was expecting. PET shows stable, so I'm going to take it!!
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phet~ welcome To the thread , I hope you find it
Helpful to have friends who truly understand all the ins and outs of what we go through. You’ve been through a lot. I’m sorry to see you here, but welcome you with wide arms. We have a sister ship that I adore. Take a seat and let it out!
Tang~ congrats on stable. Whooohooooo! That’s awesome. Hugs hugs.
Mae~ now I’m hungry. Yummy yummy yum0 -
You all are SO funny (and true) with the "fine" thing. For me, it totally depends upon who asks me. I have one "friend", who often texts me to ask how I am. If I say anything but "fine", she smothers me with her concern. I know she means well, but when someone gets upset because you don't respond to a text within 2 seconds (OK, that's an exaggeration) it's a little too much pressure. She gets upset, and starts asking, "Did I do something?" "Are you mad at me?" Sheesh, woman - maybe I'm in the bathroom or taking a nap or just don't feel like talking.
illimae, do you deliver? San Diego is not that far from Houston. Looks delicious!
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Phet,
I live not very far from NIH, which is just outside of DC. They are doing several trials in immunotherapy. If you want to get an idea before you talk with the doc there, you might want to go on clinicaltrials.gov and search for NIH trials. NIH also has a separate listing of all trials, but I haven't bookmarked that and my recollection was that it's exhausting to go through. They have several trials that only they are running, so you could ask about those versus trials at other centers. Some of the NIH trials require that you spend a good amount of time in the hospital during active treatment. They are quite interesting, though.
I think that the fact that you are triple negative (did I get that right?) will open up more immunotherapy options for you. I have just started keytruda (second infusion next week) but I am not triple negative -- I am hormone positive, HER2 negative. But I have something called tumor mutation burden high, which has FDA approval for my type of cancer. But I keep seeing things pop up that relate to triple negative.
Welcome to this little group!
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tangandchris- Woohoo on stable!!!!! But I thought your CT showed worsening--more mets and larger on some. ???? But your MO says stable for now?
Mel- Sorry to hear your DSS had car stolen. Wow.
Mae- Looks delish!!!!
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Candy- that was the CT and he said the PET showed none of that was active. I'm not sure I completely understand to be honest. I learned to not try and get results on my own anymore.
I don't know why he had both scans done if he ultimately looks at the PET.
But I will take stable.
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tangandchris,
Yay for stable.
Yeah, I'm not sure what any of these tests reveal in isolation. My MO will not use PET scans -- says they won't be covered by my insurer (Medicare) (a point debated on BCO before.) So she uses CTs and nuclear bone scans (the second of which seems more confusing than less many times.)
Anyway, for now, just be happy for that stable, and hope it long continues!
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tangandchris- I do not understand all the scans either. I guess you just have to trust your MO that you are stable. I do not do PET's. Had 1 on diagnosis. Wanted another at 1 year anniversary, but insurance denied due to "stable" on CT. Had 2nd PET later when CT showed possible progression. So... I guess PET's for me only if there is a question on the CT's we do.
Ok, I am freaking out. I found out today that my health insurance-- COBRA-- is done in June. And I will not get Medicare until Jan 2022--- with SSD coverage. So I have no health insurance from June to Dec. !!!!!!!!! I have a call into an insurance rep to shop for insurance coverage. Great. Something else to deal with.
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Candy,
The insurance thing is scary. Make sure you go onto the health care exchange for your state and take a look. You might be able to get a decent plan there to tide you over until you move onto Medicare. A broker can help you sift through all of that.
Good luck.
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hi, trying to catch up!
I got my CT results yesterday & they were a bit mixed. Liver mets continue to shrink, lung met too early to tell if rads worked, new blob on T10 so I need a bone scan. Staying on treatment & currently beating median pfs on this treatment so that's a good thing
I'm leaving for chemo in a couple hours. tangandchris - congrats on stable! Other than variations in the different modalities, one thing might be that your MO is using something called RECIST criteria for measuring progression. They're an international standard for clinical studies to all report solid tumor disease improvement, stability or progression, the same way. There has to be a total change of a certain percentage for it to qualify as progression. When my lung met exploded in Nov I was still technically stable because my liver mets had continued to shrink so in total the volumes of the tumor burden were not increasing.... Clinically though it of course meant we had to attack the lung met.
Does anyone else get totally drained by medical appts? I haven't been napping since December rads, and all I did yesterday was get blood work and sit in the car waiting for it to be processed and then went to the MO appt. I came home and had to go straight to bed for a 1.5hr nap. Emotions are tiring!
hugs everyone
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Tang - glad to see that it was ultimately all stable, I know you were very worried!
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moth, I'm definitely a napper. Usually most days. Maybe it's part escape? I still enjoy it and will defend my right to take a nap when I need it. Not that anyone has questioned that right (so far).
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Candy - When I was at risk of losing my job last year, I was looking at insurance options as my husband and I get our insurance through my job and it isn't offered at his. Of course COBRA was one of the options. Due to COVID, they were talking about extending the amount of time you could be on COBRA beyond the 18 months that it had been. I'm not sure if it got extended or not but you may want to look into it.
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moth- Woohoo that the liver mets is shrinking. T10 "blob"? Maybe chemo will keep it at bay? Yes, cancer "maintenance", as Mel puts it, is very tiring.
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cowgal- I tried for the extension to get me to Medicare and was denied!!!!!! I do not understand why. I talked to the rep on the phone and she said blah blah blah. Clear as mud. But as far as they are concerned my coverage ends in June. I probably cost the insurance company too much with my cancer treatments and they found a loophole to get rid of me.
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*Oops I see now it was Candy who talked about insurance!* Sorry for my error.
Tangandchris, congratulations on stable! COBRA must be quite expensive, no? Hope all goes smoothly with getting new insurance til you qualify for Medicare.
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Moth - Even though I am currently in a situation where its a one day a month to Do Cancer, I block the whole day from work (never know when I may make it home!) because inevitably when I get back I am zonked, need a quiet room to decompress, and usually need a nap. I always plan to order dinner in, or something easy that is tasty and can be reheated/tossed in the oven (chicken fingers and oven fries!). It takes up so much headspace, lot of hurry up and wait between treatments and bloods and MO etc. Like going to the airport, only nothing fun comes from the experience!
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I’ve been lurking...not my usual MO. But I’m just so exhausted. DH (stands for ‘Dumb Husband’ in my house) finally decided to go into rehab. Before you high-five me, dummy decided to get ripped over the last 2 days. We couldn’t discuss anything about anything before he left, so I’m sure there are going to be some things that either get missed or not accomplished while he’s gone.
I just finished my first cycle yesterday on Abraxane, and you’d think DH would want to at least try to support me, but no. Alcohol has completely taken over this man. I don’t recognize him anymore. And I am SO pissed off I can’t even begin to say. Anyway, at least I have some quiet time to myself until he gets back. I hope he stays for a month. That would give me time to figure out next steps. I’m just not sure I can stay with him even if he gets sober. But it’s only day 1, so I’m trying not to get ahead of myself.
In the meantime, I have 2 sisters that are coming to stay with me for a week apart, and then my BFF is coming after that. Good thing I live in FL because I’m sure that is also why no one says ‘no’ when I ask about coming for a visit.
To all who have had scans that are positive, good stuff. I’m hoping my next scan is better than the last.
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