My Husband, My Life, My Love, My Family, My Cancer
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Mara Sorry to hear you were struggling yesterday not fun when your body doesn’t do what ypu want it to. I hope you get in for an MR soon to begin to find out what’s going on. Glad you’re thinking cautiously rather than falling again. Hope its a better day today.
Irish who cares .. right? If the food is good and the price also , go for it! Enjoy your lunch.
Mei Yep has been sooo humid just gross outside. Fleece and baking sound good to me. I love to bake,glad you’re feeling well enough to do it.
Shanagirl Hope it was a good Neuro /PM visit. Cervical stenosis can get painful for many people. Thinking of your DH praying all turns out ok.
Tanya Safe travels sounds like you were having a fun filled trip visiting family.
Hi to everyone else in the room, always thinking of you ladies🥰
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Mara- You really need to get checked out!!! I say this because I care for you. I would be calling your docs today. Tell them what happened. Demand an MRI and a check up. It could be the cancer. It could be something else— MS, mini strokes, or something else. If you sit on it and wait you could be doing more damage. Maybe a 1 time episode you would want to wait and see, but multiple times now sounds like something is wrong.
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oh Mara~ maybe you should see someone sooner. It worries me. Everything you’re mentioning. I’m very worried. Please at least call oncology. Maybe having db visit would be good, sounds like a long night sending hugs to you my friend. Keep in touch if you can. Get some rest.
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Mara-This sounds really scary. Perhaps brother could take you to the ER if your doctor does not schedule the MRI today. In your pocket.
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I am calling oncology as we speak, just on hold now. I have been fine today, going to proceed with PT since balance is fine. I will mention balance issues as well to the lady coming this afternoon as well to get services that way. I am just not wanting emerg here because it can be many hours and no tests.
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Mara
Please notify, the Care team and DB about the episode ASAP. You are always so upbeat and self-sufficient that I worry that you might not be taking this as seriously as those of us who love you see it.
Irish
Spent many happy hours of my childhood on the Seaside Heights boardwalk! Wonderful memories of that beautiful carousel and being terrified that the Wild Mouse wouldn't turn at the last minute and would hurl me straight into the Atlantic! Loved getting fries at Snow's on the boardwalk and strolling with a friend thinking we must look very cool (pretty sure we were 12 at the time).
Shana
Hope you get pain relief for your back.
Cookie, Intolight and everyone else who was in my pocket for yesterday's scans, thank you so much. The support was incredibly helpful.
Bone scan results still not in, but CT scans all say "stable" so that enormous "whoosh" heard late last night on the east coast was me exhaling. Don't meet with the MO until 7/17, but there were a few odd things that I'm hoping someone here can comment on. Several sclerotic "stable" mets were noted on my ribs - if the report says "stable" doesn't that mean they were also on the last scan (from January)? If so, then why weren't they mentioned in January's report? In addition, there is a 4mm "stable" nodule noted in the middle lobe of my right lung, but no other nodules noted. In January, there was a 2mm nodule noted in the lower lobe of my right lung, but no other nodes. Did the nodule move from the lower lobe to the middle lobe and double in size?
Have had to make corrections to every scan report I've had since my Stage IV diagnosis last May. Really concerned about the competence of these radiologists. Anyone else having a similar problem?
Hugs to everyone and here for pocket duty for all.
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Mara, praying you find solutions to what is going on quickly. I am praying for you sweet lady.
Eleanora, yes your scan reports sound confusing to me. I am sure it is hard to wait until the 17th to discuss them with your oncologist. Does he/she call you in the meantime? I have never had to correct a scan report before but I do discuss them at length with my onc. Where do you live?
Pulmonology report from yesterday was pretty good. I am just too worn out from seven years of meds to process oxygen well at the altitude where I live (7200 ft.) So I will need to stay on oxygen… I forgot to ask if it was reversible if I were to move although we have only been here one year and have no plans of moving. Still fighting for a mini-concentrator. This time when the office called for me the O2 company told them they had been trying to get approval from a different doctor. What? They keep giving me the run-around. I am sure it is insurance and Medicare. I wish they would just be honest. It has been two months! I was told I should have it within the week. I feel so housebound! Today I see my onc so I should know whether I will resume my Verzenio. It is raining again in Colorado. I feel like I live in Seattle! What weird weather.
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Eleanora- Woohoo for "stable", but I too would have questions about the rib met and the lung nodule. I too have had reports that seem confusing. I know we pick apart every word, but it does seem that the different radiologists reading the reports is confusing. Some are more thorough, it seems, than others. I have seen my liver report mention a lesion in "Segment 6 unchanged", but that is the first report to mention something in Segment 6 of the liver. ??? I wonder how thorough our care really is.
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You are in need of seeing a Neurologist. I see one for my neck cervical stenosis which when really flared up, I lose use in my fingers an it also causes balance issues. A neurologist could send you for an MRI to find out what’s going on. Maybe your cancer clinic will have a neurologist look at your spine and also check for brain Mets. I sounds like you are taking control of this. For now try and rest and give into this weakness until you know what you are dealing with. I”m sending saying breath prayers to God to keep his hand on you while you deal with this💗
@irishlove Ahh yes, I have wonderful childhood memories of Seaside Hts as a child and also with my children walking the boardwalk at night after a day at the beach with them😊. Yes we are right across the bridge from SS Heights. Love it. We can see the Ferris wheel at night from my husband’s office window. It’s beautiful in the summer at night to walk the dogs and see it all lit 🎡
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I will discuss it with older DB, I tried to get through to the cancer clinic but it was still on hold. Not willing to go to the emergency yet. My worker comes today, I want to deal with that. Should anything further happen, I will force myself to go.
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It’s so hot here too. It’s. Too hot to even go to the beach. I don’t like feeling like a French fry🥵. DH was just saying he can’t even work outside today. He checked the weather on his phone and it said the temperature is over 90 but the heat index says it feels like 107. So we are hanging out inside today. The house is nice and cool. We keep the thermostat at 75 and if it goes above that in the house we knock it down to 73 and the the air kicks back on . Ceiling fans are going too. Yesterday was brutal also. I hate going outside if it’s hot. I just can’t take the heat anymore. I don’t like it. Also we won’t walk the pugs in this weather and they would burn their feet on the pavement and have a hard time panting in this weather.
Hang in there Ladies. This too will pass.🥵☺️💕
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I feel so sorry for all you who are struggling in this heat. It is 57 and foggy here in Colorado Springs with a possibility of severe weather later. We are supposed to hit 73 but I doubt it, and it looks like the rain continues for the next 10 days. We have been trying to get a deck replaced and it has been too rainy to work. Unusual for us! They say Denver has broken rain records this year. We are about 60 miles south but I think we are breaking records too. I would stay in but have to go to the oncologist.
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So the CCAC lady just left, put in my requests for getting up after falling but there is a wait list. Still waiting for my RO and an MRI. At this point, emerg will not be happening unless more stuff happens. Going to keep up extra PT, walking and marching as well as morning walks. Nice lady and there will be a weekly nurse on top of my check in call on the daily.
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Mara - take care of yourself, lord knows its scary having to manage yourself and the choice is staying home and taking care or going through an 8hr+ Emergency room trip because there isnt anyone on the other end of the phone line to be proactive. Do you have a way to contact your brother or anyone quickly if you cant type? I feel like you may have mentioned some form of emergency alert system.
Nothing new here, just having a little light dinner. Early evening seems to be the worst time of the day for this pain, but every day its a little less. I walked to the corner shop and back without cane at noon today :) (a whole like 400 feet there and back!) Tomorrow Im going into town to have lunch with my guys. Thinking about going for long term sick leave from work as it is causing more mental distress than a positive non-cancer distraction at this point and I cant move forward without some space from that place. We'll see, first step is a call to the HR dept tomorrow to see exactly where I stand.
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Mara - I echo everyone’s concern. Your symptoms require investigation. Feeling like your legs aren’t working is serious and if that happens again you should think about an ER visit. Make sure you always have your phone with you. You are like family to us - wish I could be there to help.
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@eleanora My initial diagnosis PET was done at Moffitt and never mentioned T12. My second PET was done in Wisconsin and mentioned that there was a slight increase in T12 metabolic activity. Huh? I told my MO that I knew nothing about T12. He brought up both scans and showed me that it was there all along but never mentioned in the report. 😡
@mara51506 Please be careful. I’m hoping they find a root cause soon. Hugs.
Waving high to everyone else and always ready for pocket duty. Stay cool everyone - except for intothelight. You are already downright cold.0 -
@mara51506 Im glad you’re staying on top of what’s going on. You are one tuff lady, doing PT, walking & marching. Keep trying to get in touch with your oncology team. And please keep your DB updated. Take care of yourself💗
@candy-678 I definitely agree with you that Mara should consider the possibility of mini strokes. Stroke is nothing to fool around with. I speak from the experience of having a full blown brain hemorrhage stroke that put me in a coma for 3 days and 7 weeks in the hospital & an in patient rehabilitation care facility. I’m blessed to have come out of that experience with no deficits in 2005.
@cookie54 stay cool, my Jersey girl friend🩵
@cm2020 , @goldensrbest , @intolight , @eleanora , @tanya_djamila @sondraf , @micmel , @chicagoan , @irishlove , @illimae and everyone else here I have missed, You are all on my mind every day even if i dot respond always. Love you all🥰
Barb 💕
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Eleanora Yaay.. I was wondering what that big whoosh was last night here !. Although I must say thanks for the whoosh we needed a good breeze lol. Congrats on stable. Yes annoying the variances in reports. Some Rads just aren't as descriptive and others just plain miss crap! So when they compare to previous and mention stable and it wasn't in the last report previous Rad missed it! Trust me when I worked in CT I would call them if I saw they missed something. You can't believe the amount of scans that are read each day, too much rushing sometimes! In outpatient we scanned a patient every 10 minutes maybe 15 for complex studies, crazy! So glad you are reading your own reports these doc aren't perfect and we need to advocate.
Mara Glad to hear it sounds like you will be checked on daily. Agree if you had a life alert that would be a good edition for your safety. It stinks that you have to pull teeth to get an MR..ugh! Please take care❣️
Shana There is apparently relief at the South Jersey shore..idk..was watching the news and it was 10 degrees cooler by the ocean. I said to my DH since we came home from MD and boating today we should have went straight to the shore lol. Stay cool there chickie❄️
RK Hope your feeling ok today.
sondraf The less stress the better! Yes talk to HR you have options. I hope you get the info you need to make an informed decision. I miss my coworkers and my patients but I am definitely less stressed. It's an adjustment not working but I got used to it.
Waving hello to all I missed and continued thoughts and prayers as usual. Also we got the old gal Daisy in the water yesterday to cool off, she enjoyed it!
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cookie~I love daisy. Omfg so precious. I love dogs. She’s beautiful how old Is she. Thanks for sharing pics. Nothing makes me happier than puppies and dogs! Love that she went in the water. Smiling over here!
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eleanora,
What gets written in my scan reports has varied over the years, even when my findings are considered "stable", depending on which radiologist does the reading and reporting. This variation in reporting was made more clear to me after I established with a second opinion MO at Mayo. The Mayo radiologists also read and report on my scans and their reports are always somewhat different from my local cancer center radiologist reports. So these radiologists are clearing looking at the same scan images, but they apparently pay attention to different details. My Mayo MO also takes the time to show me some of the scan images and talk about the findings. My local MO doesn't take the time to show me the images and instead just goes over the report. My Mayo MO is more of a teacher.
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Thanks Mel, Daisy was 9 in April. We rescued her sight unseen from Labs4rescue when she was three. She really is a sweet girl, we say she’s half Lab half chicken lol. Poor thing goes from digging up our yard and chasing small animals to being afraid of many different things. She literally lives in one room in my house because she’s too scared to go up steps or walk through thresholds. Long story but she spent most of her life before we got her living outside in New Orleans. So it’s really quite amazing that she enjoys the boat!
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Good evening everyone. Hope you are tucked in safe and sound. On and in pocket duty for all and hoping more information comes to light regarding CRISPR studies. I read the NY Times and Wash. Post daily and one of them did a light read on these studies.
Had my blood draw today and it took 3 tries to get a vein. I hydrate heavily but these veins, geez. She found one in my hand but was reluctant to use it. I gave her the go ahead.
Goldens, oh your baby is adorable. What a difference you have made in providing such a loving environment. I know you probably feel just as blessed and thankful to have Daisy in your life, but I still want to say thank you for taking a chance on her.
Mara, I hope your DB will help get you to appts. I can tell you a lot of what you describe sounds neurological and is in the same wheelhouse as MS. Inflammation can really wreck havoc in the whole body, so perhaps they can look into that as a cause and get some relief and answers. Sometimes we just need that extra push and support to get the help we need. I'm sure guilty of procrastinating also.
Mel, thank you for hosting us. You are truly the hostess with the mostest! It's comforting to visit each night. Prayers for all of our ladies and gents, too.
Waving to all and hope for stable or improvement and always peace in your days and nights.
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Mara, I agree with everyone's concern here about you, you are a vital part of our community and I'm hoping you can get answers very soon as to what might be triggering these symptoms for you.
Sondra, this is only my first week of leave from my job, and being able to get more rest had already improved my overall outlook on things. I encourage you to seriously think about the long term leave option for yourself. Thank you also for your offer of London recommendations, I haven't booked my trip yet but will reach out to you when I do.
Eleanora, wonderful news on the stable CT scan! I've had reports of tiny lung nodules that come and go, my MO isn't concerned about them.
I think I may be in one of the few parts of the world that isn't suffering from intense heat, it's been low 60s and overcast here in SF. Sending cool and breezy thoughts to those of you who need it!
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Cookie54 - Daisy is precious and a day on the boat sounds amazing!
Mara - thinking of you and hoping that you can get some answers soon. I don't want to speculate on what it might be but I'm glad you are asking to get it checked out. I completely understand not wanting to do the emergency thing. I won't go unless I'm really in a hard spot either.
Shanagirl - your neighborhood sounds like a lot of fun. I would love to live on the water. I'm about 3.5 hours from the Oregon or Northern Cal coast. The beaches tend to be rocky and the water really cold but it's beautiful. My folks and I like to look at the tide pools and just watch the waves. 🌊🌊
I'm going to have to use Mara's trick using computer sticky notes. Thinking of all of you. I am continuing to have a dry cough and shortness of breath whenever I try to exert myself. My PCP prescribed a rescue inhaler to carry with me and My MO is going to order a CT Angiogram of the chest and an echocardiogram. I finished a week of Amoxicillin and don't feel any better. I'm going on 2.5 months with this cough and just generally feel off, like I'm fighting something.
Waving hello and wishing you all a good night. 💗
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SF-cakes, Im caught in both a great situation but a really toxic work environment if that makes sense. So why not make use of the really great benefits? I realized last night that it was no use getting down on myself for not pushing harder for a new situation at night when managing cancer is its own side gig. Right now I need some stability/lack of ambiguity in my life in either work or cancer and since cancer doesn't really negotiate or have an HR department, guess I better try and deal with the work side :P
Weninwi - my last scan report I even remarked to MO while reading over her shoulder 'gee, they had a lot to say this time'. Its very paternalistic here in that the patient doesnt get to see their reports and you only get what the oncologist chooses to summarize. Drives me nuts. I did at least get to see my recent liquid biopsy reports which was interesting. I hope that AI/ML models will help in the scan and reporting in the future, but it will take a lot of data and processing power to do so on some cancers. I think it may already be in trial for things like lung.
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I slept well yesterday night and feel good today, doing laundry. I did speak to the lady from the CCAC yesterday. Between the wellness check, nurse and am going to start texting my SIL as a back up as well I feel like I am covered enough. With all of these layers, I am as safe as I can be short of the emergency room. That is where I will live things for now. I appreciate you all being in my pocket and worrying. My CCAC was not pushing the emerg department either at this point but if I fall again for OT comes, to go to hospital. I am looking into a personal emergency alert as well.
For now, besides for balance exercises, walking now that it is so nice out and possibly a mall walk later. Unsure what I will eat, some kind of egg or an egg and bean bite made out of pancake, I will see.
I wish everyone a good day today.
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I did notice a package of frozen hamburgers so am cooking one up now, when it cools, I will chop it up. Think I will split with beans and cheese, not sure if eating all at once. Have to look into one of those meat grinders I think as well. Keeping myself busy today as well, probably go get some hash browns as well. Splitting the meat up for two to three meals as well.
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Just dropping in to say hi.
Mara, I hope you get some answers.
I had my endoscopy Wednesday. Biopsies came back benign, but was so constricted, doc had to switch to the micro/spaghetti scope to look at things. Was able to dilate the esophagus to 12mm (usually normal is >15).
Still having trouble with coughing/phlegm at night. Rough night last night. I'm thinking of getting a wedge-type pillow. Has anyone used one?
Waving hi to everyone. I'm in a bit of a fog, but hopefully it will clear up.
Love to all,
Carol
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@sunshine99 My husband has had his esophagus stretched several times and has slept with a wedge pillow for years. He did not find it comfortable but he did it. Two years ago, we splurged for a SleepNumber adjustable bed. He finds the adjustable bed much more comfortable and I’ve been using it lately because Enhertu gives me wicked heartburn. I hope the stretching helps you swallow better and gives you some comfort even if they couldn’t stretch it to normal size. The first time they went in to stretch my husband, they couldn’t because he was so inflamed that they were afraid of tearing his esophagus. Lesson learned that he will never let it get that bad again.
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