My Husband, My Life, My Love, My Family, My Cancer
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Elderberry - I don't do Instagram either, but I was able to see moth's Insta account (/itsjustastage) without signing in or anything.
Ugh - got Achilles tendinopathy happening, probably from going 0 to 500 in terms of exercise over that trip. Of course Mom wants to go here there and everywhere on her last few days so its been a bit painful. I mentioned it to my lymph PT yesterday and that bought me some pink surgical tape and a referral to radiology for a DVT check. No blood clot at least so now I sit on the couch with ice and hope this feels better soon. Feeling so so fatigued, though, I just want one jammy day to lounge and recover!
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Sondra, I hope you can take the day off with jammies too. Between that and the icing and rest, you should be going in a short time. I am sorry that you hurt your achilles tendon. Hope the trip was good though.
I am not planning too much today, debating a bus trip to the mall to walk around. Still not huge on the outdoor walking though it takes a few minutes to get to and from each bus stop so there is that. The mall is one option, another is to take a bus to the dollar tree and see what laundry goodies they might have. I mix those with my name brand stuff to stretch or just to make a new detergent.
My breakfast was weird but actually tasted very good. I took a small can of pre sliced mushrooms. Baked on a baking sheet with cooking spray. I put them on at 450 for about 10 minutes. Due to the moisture, they did not burn but they were not slimy, still chewy. I added cheese on top, melted in microwave for 60 seconds, brought out, added italian, bit of steak seasoning and salt. Wheat bran for fiber as well. I bought some ruffles onion chip dip as well and put a dollop of that on top, combined and it was really good. Would probably make a decent snack. I will have to get back to beans but todays overall lower calorie fare was quite good.
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Good afternoon ladies
Mel I remember paint by number from when I was a kid. My finished results looked nothing like the paintings you displayed.
Sending hugs to everyone going through scans, new treatments and other unknowns of this disease.
I had my PET yesterday. thanks all for the pocket duty. I almost had a full blown anxiety attack bc they had to tie my arms down with some type of velcro. I'm totally not into bondage, and especially restraining me and then sticking me in that machine. No way. We found another solution. I was supposed to go upstairs for bloodwork afterward, but when I finished my only one needle stick scan, two cups of lemon crud, and restraints I decided to walk out the door. Yeah girls I walked out with a pocket full of support!!! I'll be back next week for faslodex shots, bloodwork and results.
Mara I'm impressed that you cook breakfast like that daily. I make something that lasts 4 days and more. Its just all fresh vegetables (today- white mushrooms, cauliflower, cabbage, olives, bok choy, basil, spinach, onions, scallions, snap peas, and string beans) sauteed in olive oil and then my coffee and toast. Now all those veggies take forever to dice so that's why I make extra and put them in containers for a week worth of breakfast. Sometime I add a beyond plant based sausage.
Take Care All
Tanya
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Tanya, I will be in your pocket for the results and anytime you want someone there. As far as the food, I eat a core group of items and try to make them different. Beans usually are at the center and then I can build with rice or pasta. I also get the inexpensive pasta meals and just use a couple spoonfuls to add something more to eggs, beans or such. Seasoning does the rest. I have a new garlic caesar that I know is salad dressing but I figure it would go well. The onion chip dip I used on the cheesy mushrooms this morning was really good.
Hoping I can work up motivation to get up off my but and do something besides surveys. May bribe myself with a bit of chocolate to do a half hour walk on the treadmill after to start. Once that is done, I may venture out after my friendly check in call, at least that is what I think it is called. I will say this lady is really nice and she is learning to keep the calls shorter which is good.
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Moths blog is never tell me the odds 2017. Th errs a link to it in her bio
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Tanya- I get it. I had my PCP 4 month check-in scheduled for next week. I called and cancelled. "Do you want to reschedule?" they asked. "No" I said. I just cannot do it right now. Just do not want another doc appt right now.
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Tanya, that sounds horrible! Why in the world would they restrain you for the scan??? I'd freak out, too! I hope you're recovered a bit from the trauma.
I have my scans next Wednesday. Was "lucky" to get the approval from the radiologist to get the contrast dye. Not feeling "lucky" to have Stage IV cancer, but apparently that moves me to near the front of the line to get the contrast.
I'm roasting root vegetables today to put on a salad later - sweet potatoes, turnips, and rutabagas. My last batch was pretty yummy.
Carol
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I've never been tied up for a PET. I was velcroed on my ankles and my arms for another scan. Bone. I thought it was weird but fortunately did not freak me out. I am sorry, Tanya, that you felt the need to flee.
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Sunshine, that sounds really good to me, enjoy it!
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Tanya,
I can totally relate. The last time I was scheduled for an MRI, they strapped me in with Velcro across my chest/stomach area. They pushed me in this machine with a small opening, and I immediately freaked out. They took me out and tried to give me anti-anxiety drugs, but I told them that unless they put me completely out, I was not getting in that machine. I haven’t had an MRI since. So stick to your guns. I would have told them no way on the Velcro strap-down. I am proud of you for taking charge and walking out. We have rights as patients, and yes, our doctors send us for various tests, bloodwork, etc., but I’d like to see how they would react if they had the same experience as you did. Hats off to you!
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Tanya and booboo, that’s awful, I can’t imagine being confined that way. I was nervous at first but closed my eyes and thought of my happy place (the spring fed pool from last week). Now, I just close my eyes and sometimes fall asleep. I hope you and your hospitals can find a better way.
Nothing interesting here, just mountain chores today.
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When I went for bone scans, my arms were done up since the machine was narrow at some points and of course the little platform coming toward my face was freaky the first time. I was allowed to leave my earbud in my ear with the phone above my head to keep listening to music in one ear, that way I could focus on the music and not the scan.
Not too much going on here. Played mobile games and reached my earnings goal, got videos playing that pay me when ads are playing on my TV and did a couple of survey, taking a break from all that after breakfast and taking the bus to the dollar tree. Offers short bursts of walking and of course the sitting on the bus. Gets me outside for a change as I still don't enjoy the treadmill as much. Also need to keep up with more than marching and practice keeping my feet further apart as I am starting to believe I trip over my own foot. Getting off at the front of the bus as well since the last couple times my leg went out on me when stepping off the back. May just bring my cane so they do not give me a hard time getting off the front.
Breakfast will probably be baked black beans, beefless ground and chopped frozen spinach. I'll do the beans first in the breville until they are crunchy, love them that way then transfer to a med-low heat pan to do up the beefless ground and spinach. Will top it with ceasar dressing, seasoned with italian and of course include a bit of wheat bran.
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Major scanxiety going on here and don't know where else to post it. Had a CT scan on Monday. Results have been posted on my patient portal since Monday afternoon, and I just cannot bring myself to look at them. I know that if they are "off" my MO is going to change my treatment, and I always have a horrendous reaction to any change. I have a video visit with my MO next Tuesday so I have to look at the results by then, but in the meantime, my stomach is all in knots.
Any and all suggestions appreciated. I've tried the deep breaths already, and tried to push that little button to display my results innumerable times -- just can't do it. Thanks for any suggestions.
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bevjen, I don't think I've seen you here in a while, but it was nice to see your name - even under the circumstances.
I'm so sorry you are suffering with such scanxiety. I wish there was a magic pill or deep-breathing exercise that would make it disappear. Maybe telling yourself that if the results were bad your MO would contact you immediately? I don't know... The waiting just sucks, right? Do you have someone else who could take a peek at them and then let you know?
Again, I'm so sorry. Sending you hugs,
Carol
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Bevjen, I think the key is this. If you are afraid to find out or stressed that a bad result may mean changed treatment for you, don't look. If you find out bad news and then have to wait for treatment, would it be worse to wait for you appointment knowing or waiting to find out. Treat yourself to something whether it is dinner, a movie or visits with family.
I am a natural born worrier about things. For me, I prefer to find out bad things when I need to know, not know and then have to wait to talk to someone. For distraction, I do housework, walk, cook or simply watch TV. I use meditations where I can listen to relaxing music which relieves stress. I don't have cancer worries but I worry about money and costs rising so I just have to push those thoughts aside, similar to pushing aside stress from scans.
I am in your pocket and supporting you. Again, which is worse, waiting for the appointment knowing the news is bad. You could frame it as being prepared for questions to ask. If you prefer to just not know until you see onc which is also valid, keep breathing, meditating and doing stuff to take things off your mind. Stop the negative stressful thoughts with another good thought. I've used that method to stop my negative thoughts and get out of depressive periods.
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BevJen- In your pocket. If it was me, I would want to know. As Mara said, to be able to formulate questions for your next weeks MO appt. Maybe think about IF your MO says you need a change in treatment, you can have some suggestions you want to try next. Knowledge is Power, is what I like to say. Holding your hand as you decide what is right for you to do.
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bevjen, I don’t know how you don’t look at the results, I check mine immediately. Would your MO call you if they were very concerning? Maybe is a good sign that they’re available before a call or your appointment.
My only suggestion is to pour yourself a drink can read the test results, whatever they say, you’ll have relief from not knowing.
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Well, finally got my arse out the door and went somewhere. I chose to go to Dollar Tree as there was some walking involved getting to and from bus stops. I also stayed within my 10.00 budget, got a couple chocolate bars, budget oxiclean and a window cleaning spray but was more interested in the spray bottle. Pleasant day for the walking I did get and I am happy.
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mara, I had to laugh about the spray bottle being more of an attraction than the actual contents. I totally get that! I guess we're weird, but as long as we're happy, who cares, right?
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Bev Jen I'm waiting with you in Mel's living room. If you don't feel like checking don't do it. But you have to distract yourself. Plan to do something. Some ladies offered some suggestions. I called my nurse before and asked her to just tell me if the results are OK so I wouldn't have to worry over the weekend. Lately I don't freak out as much waiting for the results but they're not posted until the Dr. tells me the results.
Booboo I continued the PET without restraints and then went shopping to take my mind off of the anxious feeling. I just didnt go get the blood work afterwards. It was upstairs but I had enough for the day. I do have anxiety meds but I didn't bring them bc I thought I'd be fine, which i would've been if things were normal. Cancer sucks. All this cancer stuff in your mind and you just never know when it's gonna choke you out.
Thanks for all of the support guys!!!!!!
Tanya
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Sunshine, that is right! I sometimes buy stuff that I know has a good sprayer because I spray the litter box with enzyme spray I make up. Who knows the glass cleaner may even be good. I am feeling good with the walk I got done, may walk around the block after dinner. I knew that even a small amount of walking and music might make me more willing to go out again or at least get another 10 minutes of walking. I feel good after the walk. May go out tomorrow morning and take a trip to Walmart, set the same budget. We will see.
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I got my results from my CT scan. The doctor who called said the scan was fine which means everything is still stable. I don't have an appointment with my regular MO until the 21st but I find it worst waiting and not knowing so I asked to find out when the report was in.
BevJen- everyone is different when it comes to these damn cancer results. I like the idea to have a drink and maybe have someone else take a look. In your pocket for any decision you make.
Mara - I love walking around Dollarama. My problem is I end up spending more than what I actually wanted to buy. Your breakfasts are so filling which is good. I usually end up with cereal and fruit or toast and peanut butter. The dog eats half the toast and pb. Obviously your breakfast would hold you over until supper.
Today I went out for lunch with a friend which was nice. Also bought some more flowers for extra planters I have. Tomorrow our new small patio is going in. Yay
Waving hello to everyone!
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LivingIVLife, yes, I do stay full for quite a while. My diet is inexpensive which is good as grocery prices keep rising and my income does not but I am able to manage. Was on facebook and article commenting that parents are eating one small meal eat less food so their kids can eat. I did suggest that canned food like beans, rice, pasta etc is fairly cheap to make good meals out of, just need some seasonings to add flavour and creative mind or youtube to plan meals. Canned vegetables are a fair option if fresh is beyond, peppers can be purchased frozen too. Wonder why people do not think of this. I feel bad as those parents each have multiple jobs between them. Sad.
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Living, congrats on the stable scan!
BevJen, I can so relate to the anxiety of knowing the scan report is waiting for me in my email inbox, and not wanting to look at it until I'm on the phone with my MO. I've done it both ways, waited and not waited. I'm more inclined now to look, since I'm worrying about it already the longer it sits there. The drink first (or THC if you are so inclined) sounds good.
Got out into the yard today, which always soothes me. We had the back part of our yard, on a steep slope, finally turned into tiers last year and the jasmine and lavendar look happy this year, everything else still growing. Bringing flowers into the living room today, thinking of you all.
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sf-cakes the gardens are beautiful!
Did anyone read on the liver mets forum that Moth is not doing well. Moth please know you are in my daily thoughts and prayers. We will never understand the whys of this horrible disease. Hugs 🫂
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Living- Good for your stable scan.
Ok I had a surprising, frustrating, and upsetting Palliative Care video appointment today. I had not met with them since March-- we usually schedule a meeting after my scans to discuss any possible changes in the cancer treatment. We met after March's scans, and now after May's scans. We discuss several things-- the cancer, of course, my pain issues, my mental health (I am seeing a therapist, about the MBC diagnosis), etc.
I told the Palliative Care doc about my disappointing first office visit with a new rheumatologist (long story) and how I posed the question to the rheumatologist about the possibility for me to use immunotherapy in my future for the cancer with my documented autoimmune disorders. The rheumatologist did not answer me. I explained to Palliative Care that I read and research cancer treatments and read that Trodelvy (an immunotherapy) was just approved for HR+/HER2- MBC-- previously just for Triple Negative. My Palliative Care doc said "the Lynparza is working". I said "Yes, but I am thinking about future treatments".
Then the Palliative Care doc surprised me by saying my MO will decide, at that time of progression, what my next treatment will be. And if my MO has questions on if the treatment is right for me, she will consult her staff of colleagues and make the decision with them. And the Social Worker that is in my Palliative Care meetings also agreed.
WHAT ??!!
We talk on here (BCO) about new research, clinical trials, and we post links to articles. We have a Thread dedicated to "Clinical Trials". I just read on one Thread on here today about the new cancer drug for rectal cancer being a game changer. Good grief, even those damn commercials we loathe talk about "ask your doctor if _____ could be right for you". But, now my Palliative Care doc says that I am stressing too much, researching too much, and to have faith in my doctors to make the right decisions for my cancer. The Social Worker said I am being too anxious also.
I am tired and frustrated. I think I will just keep my mouth shut from now on.
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candy, I thought the point of the palliative care team was to LISTEN to YOU - not to tell you what your MO would decide. You have every right to ask questions. It's YOUR cancer, YOUR body, YOUR health and YOUR LIFE!!! (Excuse me for raising my voice, but SHEESH!)
Carol
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Thanks, folks, for your suggestions on how to deal with my scanxiety right now. I did have to go today to the hospital for a previously scheduled zometa infusion, and they pulled blood, so I know there's something going on. That will give me the incentive to look at the results over the weekend. I have a Telehealth appointment with my MO on Tuesday, so all will be revealed by then.
How could I not look at the results? I've been dealing with this for a lot of years -- my first metastasis was in 2006. Lucky for me, my cancer stayed quiet until 2019, but the specter of cancer was there for all of those years, and I just freaked out.
I especially liked the suggestion to have a drink and then look at the results. Unfortunately, I don't drink (but at times like this I am sorely tempted, let me tell you.)
Thanks, guys, for being so supportive as usual. I really appreciate it.
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BevJen- knowing my nature, I don't think I could keep myself from looking at the results. I would try to wait long enough be sure that I was in a pragmatic state of mind to be able deal with results, but (and this is a big but) I haven't been dealing with it as long as you have.
Candy - WTH?! Maybe they think they're helping you reduce your stress by telling you not to worry your pretty little head about it, but seriously?! I think we are our own best advocates, and shame on them for trying to remove you from that equation.
Tanya - I wouldn't like the restraints idea either. Good for you for standing up for yourself.
Living - I love, love, love jasmine! That and gardenias are my favorites. Your lavender looks good, too. Very pretty terraces.
DH and I went to see Top Gun/Maverick today and loved it. I can't remember the last movie I watched in a theater. There were all of about 12 people in the first matinee showing. We're going to a rodeo this weekend - haven't seen one of those in ages, either. It's supposed to be ho-o-o-ot, with temps over 90°F at 7pm.
I finally called my MO's office yesterday, and asked if they had a patient advocate (I'm still pretty new there). The nurse-supervisor is involved now, so I'm hoping for a better outcome. It was March 31st when I first raised the question about a prior authorization. Still working on it. ::big sigh::
Waving around the room and stopping for hugs, where needed.
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sf-cakes - love the tiered slope! Beautiful plantings.
Candy - sorry about the outcome of your palliative care meeting. DO NOT STOP being your own advocate!
bevjen - in your pocket. I, too, would look as soon as anything showed up in my patient portal.
Happy weekend to all!
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