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My Husband, My Life, My Love, My Family, My Cancer

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  • sf-cakes
    sf-cakes Member Posts: 576
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    Cookie, hurrah for stable!

    Mara, in your pocket for next scan.

    Sunshine, that procedure name is certainly a mouthful (perhaps they intended a pun?) Hoping it goes well and you get some answers.

  • cookie54
    cookie54 Member Posts: 757
    edited November 2023
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    Sunshine I'm sure your finished by now and I pray it went smoothly. Prayers up for an ending to this esophageal madness.

    Irish Oh no I'm so sorry to hear this! Sending prayers up now for a quick recovery and peace for you. Hugs.

    Hey fellow jersey girl, thanks. Good to see ya!

    Mae Thanks you! Aside from cancer I was always lucky to just visit PCP yearly for the usual checks. Like you I am presently considered Oligo but I'm triple negative. I don't know what to think regarding progression with this, I just take it one day at a time.

    Goldens Thanks! WTH that is awful, now anxiety through Thanksgiving. Ugh I'm annoyed for you, maybe a wait list for a sooner appointment??

  • mara51506
    mara51506 Member Posts: 6,284
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    I had a less than ideal trip to the hospital. I was disappointed to find road is still dirt road, we do have sidewalks and curbs but uneven terrain still. On the trip there, I called out to a construction worker, he helped me to the road, it was more even than before so that was nice, got to the bus stop and somebody came along and said busses were not running at the stop. The lady waiting with me said shucks, I need to get to the hospital, I said she could ride with me in my UBER. Fine infusion, no issue there. Started raining quite a bit making road into mud, I had called another cab company, had to run around outside to get to the cab, did not come to the spot selected and when he got to my street, I asked if he could help me get up to the curb, he said no. I stuck my head out of the cab and got another construction guide to help me up. I was not mean to the driver but definitely irritated but happy with the kindness of strangers. Hope the road is done soon. I did get cheese and gingerale and watched videos and listened to music at the hospital which was nice. I can wait for the road to be done though would still have had to go through the dirt. All in all, the construction workers helping me were good. Rain while there was bad as it made the road gross and the second cab driver was not helpful but oh well, stuff happens and good stuff happens to. I am starving now so treating myself to a lunch out.

  • micmel
    micmel Member Posts: 9,983
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    Ohhhh Irish. I’m thinking of you. I’m so sorry you’re dealing with this. I know how painful diverticulitis is. My goodness. You’ve really been through it. I’m sending good vibes and hope it’s resolved quickly. Hugs

  • shanagirl
    shanagirl Member Posts: 390
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    @sunshine99 You will be in my prayers tonight and I will be in your pocket tomorrow.🩵

    @irishlove Oh my goodness girl, I’m so sorry you were so sick 🤢🤮you had to be in the hospital. I Hope you get home soon. Take great care. I’m in your pocket.💗

  • seeq
    seeq Member Posts: 1,132
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    Cookie - yay for stable!! I see my PCP once a year. He orders other labs (cholesterol...), and ordered my last bone density scan. He is also who I'd go see for acute care, if needed.

    Mara - in your pocket for scans on Friday and Happy Birthday on Saturday! (early, because we have to go to Ft Worth for DH's pre-op appts and I don't want to miss it.)

    Irishlove- I'm so sorry you landed in the hospital, especially in such a painful and dramatic way. In your pocket while they work on figuring things out.

    Sunshine - I hope your test with the long-ass name went well and provides answers and a solution for you.

    Candy - I think it's great that you have a provider that you've been seeing for so long. He knows you, and I think that's valuable. That was something that was never really possible for us with military life.

  • goldensrbest
    goldensrbest Member Posts: 692
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    Oh Irishlove I’m so sorry you ended up in the hospital. I can truly sympathize as I was in for the same thing at the end of May. Hope things have calmed down enough for you. I hope you are able to get home soon because there’s no rest in a hospital.
    Mara - I can’t believe that Uber driver! Shame on him! But thankful that the construction guys were kind. In your pocket for tomorrow.

    Sunshine - hope your procedure went smoothly and there was a diagnostic result.

    Finally have some sunshine today. It makes such a difference☺️. I’m getting a massage today at my cancer center. They offer hour long massages to cancer patients, caregivers and survivors for $55 which is well under the going rate for one anywhere else. I started going in late summer and try to go every 3 weeks. Sure helps my back.

    Sending wishes for all good things to my sisters here🥰.

  • emac877
    emac877 Member Posts: 688
    edited November 2023
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    Cookie - congrats on stable! I see my PCP pretty routinely. She manages my blood sugar issues from Piqray as my MO is not comfortable doing that. I also see her for maintenance stuff like cholesterol testing and if I get sick with something that might need antibiotics.

    Irishlove - Gentle hugs and prayers for you! I hope you are recovering quickly. Megacolon diverticulitis is no joke! I'm glad you went in and caught it early. You are right, labs go wonky really quickly with frequent vomiting and diarrhea. I hope you are being well taken care of in the hospital until you can come home.

    I have had a good week. My cousin is here from Flagstaff and I am thoroughly enjoying having the company. Last week I was really sick and vomiting and having diarrhea. I got to a point where I was only holding down ice chips a spoonful at a time. My mom had just had surgery and I was trying to be there for her but just couldn't so my dad and brother stepped in. I am feeling better now though and able to enjoy my cousin's visit. She has been really helpful doing some cooking and helping me with things around the house when I wear out. It's been a real blessing.

    I spoke to the RO about the two new brain mets found on my latest MRI. I am having SRS again to treat those and then we will just monitor them. Other than my balance being off they don't really cause any symptoms. I have a total of 6 now but they are small and the others shrunk from my previous MRI so that was good news. I also had a bone scan and CT scan of my chest/abdomen/pelvis and both of those were totally stable! The tumor in my liver has shrunk 4mm! So overall I think I am having a great week! It's so nice to finally get some positive news from my scans.

    Thinking of all of you and wishing you a good end to the week. In pockets for those that need it😀❤️🌞

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Oh, dear Irish! I’m so sorry! I know that when I had my issues after trying to swallow Ibrance and ended up at Urgent Care due to vomiting, I, too, was very dehydrated and blood work was totally wonky. My ketones (which I never measure) were off the chart. They pumped me full of IV liquids and anti-nausea meds. Thankfully, I was not admitted to the hospital. I hope they get things calmed down soon so that you can go home.

    Mara, I’m sorry your trip to the hospital was less than ideal. I’d treat myself to a nice lunch, too (if I could swallow it!)

    Thank you for all the prayers and good wishes! Kind of a funny story. I got a voicemail asking if I could arrive 30 minutes early since they were ahead of schedule. No problem. I arrived early, went to the wrong place to check in, got to the right place, then waited. Apparently, they didn’t have enough beds in the holding/prep area, so I had to wait (as did several other patients.) No biggie.

    When I got back to the prep area, they told me the doctor was now running a bit behind. Haha – oh well. I think they finally wheeled me into the surgery suite about 20 minutes after the scheduled time. I ended up having general anesthesia, but it was nice to just have a nap. I remember dreaming about crocheting while I was out, so it couldn’t have been too traumatic.

    They had the same issues with getting the scope/probe/US thingy down my esophagus. They found a suspicious lymph node(s) with a follicular center. Googled that – doesn’t sound good. Nice doc, though. He did mention the possibility of needing a feeding tube if I can’t manage to get my meds down. Please, God, NO!!!!! The dilation procedure was moderately successful, but still not where it should be. Didn’t sleep well last night – lots of phlegm and coughing. It’s better this morning. I’m hungry but can’t decide what would be easiest to eat. Had two Ensures yesterday and that’s all. I do have some instant mashed potatoes which I can thin down to a “swallow-able” texture.

    He recommended getting at least 5 grams of protein each day. No idea how much I get as I don’t count macros. I found some protein powder and just made myself a smoothie.

    Should have the path results in 1-2 weeks.

    Hope I didn’t ramble here too long.

    I’m available for pocket duty for anyone who needs it.

    Carol

  • mara51506
    mara51506 Member Posts: 6,284
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    Thank you for the birthday wishes. Looking forward to dinner and probable shopping, want more bagged salad.

    The weather is dryer today so the slippy muddy sections will dry up. Did a lot of stretches and PT already, need to do some ankle work as well as some walking. I did find out that UBER can pull into the back of the building to pick me up to avoid the sections that could be slippy so that is good since CT will be in the dark tomorrow. I slept well both Tues and Wed, seems to make a difference on exhaustion post Herceptin. That works well for me.

    Planning small shop with brother, want shredded cabbage salad from different store I think, enjoyed it quite a bit. Need some containers from Dollarama and that is about it Also want to grind up some sour cream and onion chips to use as another seasoning

    For breakfast, took the 1/4 cup beefless ground, little cheese, little bran and 2 eggs, fried up in pan. Put garlic seasoning instead of chicken. Salted when came out of pan. Really enjoyed the beefless ground, no beans this time but that is OK since beefless ground contains similar stuff to black beans and would have been overly filling.

    Hope everyone has a good day and in pockets for everyone who needs me. I am settled in my mind. Finally got it straight for myself that worrying about will not change any results of the internal head bleed. If it got bigger since MRI, they will do something about it, if unchanged, keep scanning and if shrunk that is best but my trying to predict would drive me crazy and I already worry a lot. I work hard to be more realistic about things.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Happy birthday, mara!

  • sondraf
    sondraf Member Posts: 1,631
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    Oh, Happy birthday Mara - are you going to visit with your brother for a special meal? I was coming on here to give best wishes for your scan tomorrow, so hey, double best wishes! :)

    Sunshine - that sounded intense but who doesn't love a bit of general? Did you dream of nice yarn or a pattern or just general hooking?

    Emac - its very nice to see such a positive post from you, despite all the challenges of the last week. Sounds like the visit from the cousin is doing you a world of good!

  • sunshine99
    sunshine99 Member Posts: 2,699
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    sondra, I don't remember exactly what I was doing in my dream, but I don't think it was anything too complicated. Maybe it was the hat I'm working on for a Christmas gift. :)

  • shanagirl
    shanagirl Member Posts: 390
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    @mara51506 Happy Birthday

  • micmel
    micmel Member Posts: 9,983
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    I also see my pcp once a year for bloodwork cholesterol etc. and some paperwork filled out for my disability. I function with medicine with my palliative care doctor. I see them every three months.

    im in pockets as needed. Hoping everything is going at least ok. Hugs and love to all!

  • goldensrbest
    goldensrbest Member Posts: 692
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    Happy Birthday Mara🎂💐🎈🎁🎉. Hope your day is fabulous! I agree with you about worrying. It doesn’t change a thing and only burdens us with stress. And it helps knowing we have support from everyone here.

  • intolight
    intolight Member Posts: 2,247
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    @mara51506 Happy Birthday! Hope your day is filled with love and good news!

    Cookie , I just saw my PCP this week. He likes to see me every six months to pull everything together with of so many different doctors and types of input. They are all in the same system (my choice) so he can read everything…I am a complicated case! He also catches little things like cholesterol, vaccines, etc. I just think any extra care is good. Medicare covers it all so I am not paying extra.

    Neurologist says PT should help my pain and he wants to wait and see how it does. Tomorrow I get my monthly Faslodex and tri-monthly Zometa so I should be staying in and taking it easy for a few days. My Christmas decorations are close to being finished (don't judge!) This is early for even me but then I won't have to stress over it in case something happens. Two years ago I spent the week before Christmas in the hospital and the next month basically in the recliner so I am a little anxious to get things done when I feel good which is rare. We also moved the following February so it was a lot to handle at one time. This year should be quiet.

    I just got approved by the Foundation being covered another year for the Verzenio. Let's hope I can stay on it that long!

    Carol, how are you feeling today?

    Thinking of you all today.

  • micmel
    micmel Member Posts: 9,983
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    Happy Birthday Mara! 🎁💗☺️

    sunshine~thinking of you. I’ll be in your pocket

  • cookie54
    cookie54 Member Posts: 757
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    Thanks for the input ladies regarding PCP, maybe I should get my butt over there to check-in.

    Mara Pocket duty for you tomorrow's CT and may you get there smoothly. Early Happy Birthday to you, celebrate you as you deserve it!

    Sunshine Hope you are finding something that you find satisfying and filling to eat. Gosh you have been through so much, big hugs.

    emac I'm so happy to hear you received positive news! We all need that to help us to keep pushing on and to make us feel like all the crappy side effects are worth it. Glad to hear you're feeling better and enjoy your cousin's visit.

    irish Thinking of you ❤️

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Ladies, I'm really afraid. I think I may have had a seizure today. DH and I had run some errands and Costco was last on our list. As we were loading stuff into the car, I had this really strong feeling of deja vu and then a wave a nausea followed (just the feeling - no vomiting) and then I felt like I needed to lean against the car. D asked if I were OK, then I hear him saying, "Honey are you OK?" He grabbed me and was holding me up because he could see I was going to fall if he didn't.

    I'm upset and afraid. We came home and I helped unload stuff and then had some lunch. I don't want this to be happening. I did message my neurologist, but enough already!

    Thank you for the pocket duty!

  • micmel
    micmel Member Posts: 9,983
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    Sunshine~ I’ve had spells like that at least two times that I can think of. Please be careful and keep an eye on yourself. Keep hydrated. And fed…

  • illimae
    illimae Member Posts: 5,657
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    Happy birthday Mara 🎉

    in El Paso for treatment and lots of errands. DH is currently in Lowe’s and I expect him to still be searching for stuff when they close at 9pm. Picked up my car from a repair shop too, so I’ll be following him home, in the dark, without my glasses for night driving (I forgot them at home). Ugh, a late night 3 hour drive really sucks.

    Hope everyone has a nice evening and good sleep.

  • irishlove
    irishlove Member Posts: 532
    edited November 2023
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    @mara51506 In your pocket for tomorrow. Worrying is one thing I'm good at, so I understand. The best thing I find is the mantra, one day at a time. And if that's too difficult, then adjust accordingly. I hope your news is good news. A very early HAPPY BIRTHDAY to you. I hope it's one of the best..ever!

    @sunshine99 Now that is a scary thing to happen. I hope it's passed completely and you will be ok. Check your potassium levels, something I just learned that can cause that feeling and heart issues. Our poor bodies are so immunosuppressed that it causes all sorts of medical situations. I know I have to smash pills due to swallowing issues (an MS thing). But I recall you saying you can't do that with certains meds like Ibrance. I hope that everything is negative and you heal fully. P.S. We used a food chopper back in the day to make baby food. Perhaps that can help with certain foods to get you more protein.

    @emac877 Gosh thinking of you as you receive treatment to knock down those pesky mets. May they disappear completely and your balance be restored.

    Waving and thanking all of you wonderful ladies for support not only for me but for all that come here. I'm home after a week. My own bed (need sleep badly) and to see G.D. again. Missed the family and pets, too. I think the proper diagnosis is megacolon colitis. I do have diverticulosis also. This was intense and I hated the morphine effects. I've never had morphine before. I still have mild diarrhea, mild pain and bruised to hell. I declined morning lab work and a new IV last night. Already had two put in during the week and man was I over it. Lymphadema reared it's ugly head, so I had to stop using the left arm completely for IV or blood work. They do b.p. monitoring on my ankle.

    May tomorrow bring you a beautiful fall day to make more memories.

    Laurel

  • shanagirl
    shanagirl Member Posts: 390
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    @sunshine99 Try to stay home and rest. You just went through that procedure on your esophagus, and you were not allowed to eat or drink prior to it, right? You were probably weak and need some nourishment and hydration. Errands and Costco may have been too much for you. I hope you feel better this evening and sleep well. Tomorrow is another day and hopefully you’ll have some answers regarding your swallowing. In your pocket, as we are all here for you.🩵

  • sf-cakes
    sf-cakes Member Posts: 576
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    Sunshine, my husband had a couple of episodes like what you described and he was dehydrated (per his ER doc). I hope you are feeling okay now, I would be scared, too. Can the universe give you a break, please!

    Emac, so good to hear some positive news coming your way, and that you had good company visiting.

    Mara, definitely in your pocket for your scan tomorrow.

    Irish, glad you are finally home, that is a long time in the hospital. Hoping for some relief for you.

  • cookie54
    cookie54 Member Posts: 757
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    Sunshine I hope your feeling better today. As others said dehydration may be the culprit and I hope it is. It definitely can give you similar symptoms.

    Irish Glad to hear your home! Sorry for all the the poking and prodding you had to endure. I pray you will continue to recover and stay out of the hospital for quite some time.

    Mae In your pocket for treatment and I hope you arrived there safely.

    Mara Thinking of you today, fingers crossed and prayers up❤️🤞

  • candy-678
    candy-678 Member Posts: 4,148
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    Mara- Happy Birthday. When is your birthday? Also, thinking of you going for your CT, today, right?

    Sunshine- Yet something else, geesh. Thinking of you.

    Waving HI to all.

  • sunshine99
    sunshine99 Member Posts: 2,699
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    Thank you, everyone. I've been having more episodes of deja vu and have seen a neurologist a couple of times. She's ordered a couple of EEGs to check for seizure activity. I messaged her last night, so we'll see what she has to say. This is the worst episode I remember having. I really want an MRI of my brain, just to reassure myself that the cancer hasn't spread there.

  • emac877
    emac877 Member Posts: 688
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    Sunshine99 I am glad that you got in to see the neurologist. It could be a fluid/electrolyte imbalance but I don't think you can rule out something neurological yet. I would definitely think you meet criteria for a brain MRI. Even if there's nothing there they have it as a baseline. The EEG is a good idea too.

  • mara51506
    mara51506 Member Posts: 6,284
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    Thinking of you Irish, in your pocket to relieve the pain you are experiencing.

    Sunshine, don't worry about rambling, my posts go just as long. If you can stomach it, chocolate milk will definitely help the protein need, the potatoes would be good as well. Not sure if you can eat pureed foods but that would open stuff up as well for you and give good nutrition but Ensure and protein can keep you stronger.. In your pocket as long as you need me.

    Shanagirl, that is really cute!

    sunshine, you definitely had a seizure, the deja vu is a strong indicator and needing something to hold on to at all. I don't blame you for the fright and am in this pocket as needed for this and until you learn a little. In the mean time, take the food and hydration as much as you can, that should help your body also. Don't google seizures either, could go down a giant rabbit hole as you know as many things can cause a seizure. Work on your swallowing as much as you can, that should be your only consideration. Slow breathing in through nose, slowly exhale through mouth, pursed lips to keep body calm.

    Candy, my b'day is November 11. Planning to get a dessert type treat on Saturday, thank you. Will be 52. My CT is today, going to try for the bus but make sure the stop is in working order. The road is not bad to walk the short distance to the stop but will check if the stop I want is in working order. Prefer not to need an UBER. I managed to stop assuming it is the end for me due to the bleed and really managed to focus on what is in front of me. I am a worrier normally but realized that I have to worry what is in front now vs later or I will be a puddle of tears and fears. I appreciate you thoughts..

    Sunshine, I responded 3 times on this post because there were 3 issues for you. As you are Stage 4, you should definitely be given an MRI to rule brain issues. Not a bad idea to write down somewhere what you remember feeling before, during, dejavu and after with the nausea. I had seizures in the past way before cancer and there was no explanation, was given Tegretol, just a low dose I take at night. Been doing that 20 years. Never did find the cause of the seizures as EEGs did not trigger seizure activity. In your pocket for all tests that you may be going for and trying to knock out your issues, even if one at a time.