My Husband, My Life, My Love, My Family, My Cancer
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I also find peace of mind when knitting or sewing . I don't like making big things, but have found the local special care baby unit need hats etc for premature babies. Although, I would love some cuddles with Theo pls micmel, I am prepared to join the queue .
Holding anybodies hand who needs some support.
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I’m sitting in bed looking out a window at the mountains while sipping a cup of coffee with two pups asleep on my lap. Great start to the day so far.
Seeq, see ya later 🙂
Good morning everyone
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Good morning ladies, I hope you had. A night of rest and good sleep. Last night for me was not which is unusual. I had a lot of night sweats, woke up freezing and had to put a dry nightgown on, also coughing. Other than that, I’m ok. I wanted to check in with you all before going for my NM Bobe Scan today at 1:00. Gott leave by 11 because it’ an hour drive to Hackensack John Theurer Cancer Center, Hackensack Hospital….
@micmel I hope you and Theo had a good night. Can’t wait to hear more about this little one.
@denny10 I always loved knitting and crocheting when I was a newlywed 51 years ago. I forgot how to do it because it’s been so many years since I made a blanket, sweater and scarves. I should Ryan to look for online instructions to pick it up again. Right now my peace and joy is my art paintings. I haven’t made it to the gallery much this summer though. I have some work to pick up and also to bring there.
Have good day everyone💗
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Irish love, I am sorry, the tremoring and ears ringing were a couple of my symptoms. As far as getting the pressure off, it will definitely get rid of most symptoms, it did for me at least.
You can also usually get an anxiety med for the mask as well.Mel, Theo looks quite sweet and definitely will give a lot of love and happiness for you.
Thank you for sharing Nicole Rods goodbye. She is one of the unfortunate cases where nothing worked to keep her going. My condolences to her, the family and friends her in real life and here.
Mae, the mountains sound lovely. Pups as well.
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I have a routine nurse visit, I kind of hate them but if I want certain things, I must accept them. Other than that, doing surveys, games and other stuff. Laundry of course but that is no problem. Did some PT stuff and the bridge pose in bed. My butt does not lift as much as but it is less difficult.
Cooked a lb of ground beef, will go with a few meals. Pretty greasy so once cool, will use a towel to wipe out the pan. Probably split it into four meals. Breakfast will be bit of beef, chopped up beans and wheat bran and rice or pasta. Steak seasoning and ranch as a binder. Sounds good to me right now.
Mel, enjoy the pup, you too Mae and all others, have a good day.
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Thinking positive thoughts for your scan results Shanagirl!
Hugs
Eleanora
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in your pocket for scans and anyone needing support. Theo will come along. Hugs to all. Mae how are your pups. Maybe. Pic! ???
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Good evening everyone. I hope you are enjoying puppies and more dogs and cats and breathing in some good peaceful air. The heat is overwhelming every single day here in FL. I just go out to fill bird feeders and feed cats and if no rain, water my potted plants. When you have MS, heat short circuits the body and it's almost impossible to walk properly. DH turns the car on and blasts AC when I need to go to doc visits. Wonder when this will break?
Today I went for flurvescent shots. My sweet MO once again sought me out without an appt. He extended Ativan for 10 more days and prescribed some type of breathing inhaler?? He said it will help with the brain intercranial pressure. He made it clear this is not cancer related, but MS. No pallative care is available in my area. I had asked and they sent hospice, which we said no thank you. Sad because 1 in 4 people in this town is a senior. I'm gonna get thru that pet scan tomorrow.
I find it deeply disturbing that a person can not get an appt. on an emergency basis with a neuro in a town of almost 100,000. I called my 30 day case manager and told her I keep going backwards, head tremors, brain pressure, diaper (sigh) severe weakness in legs and I lost vision in my left eye for about 2 hours today. Her response was "we don't want you in the ER again". She scheduled me an appt. with GP tomorrow after Pet scan. Bottom line is IV steroids only put a patch on attack, I need a disease modifying drug so I can work on treating cancer with rads. My standing appt. is with the 8 minute man neuro that never did an physical eval , and that's Sept 6th! Last time I checked, when you are Medicare HMO, they can't deny you ER coverage. There's a trauma center-hospital in Daytona that has a neuro on staff, they will accept Humana. I'll utilize them (and the hello with her attitude) if I can't make progress in healing or receive an cancellation appt.
@eleanora and so many other sweet ones, thank you for the loving support. One day at a time. In pocket for @shanagirl for scans and all that are in need of support.
Laurel
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Irishlove, in your pocket as you are navigating this difficult path of getting good treatment for the future while dealing with difficult symptoms like the intracranial pressure. In your pocket.
Shana in your pocket for scans.
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Oh Irishlove - You are in my prayers. Absolutely correct they can't deny you ER visits. If you need to go to the ER in Daytona with a neuro on staff I absolutely would if it will get you seen sooner and hopefully with some attention to your needs.
Mel - Theo is adorable. He doesn't even look real he's so cute.
I'm doing okay. I think the weight of everything landed finally and I'm in a place where I can logically think it through. I'm usually a pretty upbeat person but I have really struggled the last two weeks. This just feels like a lot at once. I have trouble with memory and focus. My next Taxol infusion is Thursday. I am not needing the oxygen concentrator hardly at all, so that's good. I'm just managing some really high blood sugars r/t Piqray and was started on dexamethasone again probably for the brain mets. So that makes managing my sugars harder. I'm not dealing with as much as some of you but I empathize that sometimes this all feels like a lot. I think about work and it makes me sad that I likely will not be going back. I just haven't found my new vibe yet. I started a sourdough starter today. It's not probably great for blood sugars but I find joy in baking and so exploring the world of sourdough is going to be my thing right now.
Thinking of all of you. In pockets for those who need it.
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Shanagirl
How was the bone scan? Fingers crossed for clear report.
Irishlove
In your pocket for easy pet scan with good results. Glad to hear that your MO came to the rescue with more Ativan and the inhaler. Sometimes just having something in your arsenal for a bad symptom makes you feel a little better before you even take it. The weather in FLORIDA sounds brutal. You are wise to stay indoors. I second emac's comment. They cannot deny you ER coverage and perhaps you need to teach that case manager a lesson by going to Daytona and getting the care you need.
Emac877
So glad your need for the oxygen concentrator is much less. Sounds like a hopeful sign. You have always impressed me as a strong and upbeat person, and in case you have any doubts, you ARE going through a lot right now. Sourdough isn't as bad for blood sugar as lots of other baked things and it helps to have an activity that you enjoy. Bet it feels good to have that distracting bit of activity.
Hugs to all
Eleanora
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Emac, totally agree with Shanagirl dealing with brain mets and lung involvement as well is a great deal to be dealing with. I think sourdough bread sounds like the way to go.
Irishgirl, still in your pocket as well with the head pressure, hoping it is treated soon for you and relieved.
I don't know why but my body did not want to go to bed. Not stress related but that is OK. Part of it was setting up WIFI that has so far stayed connected so that is a bonus. Will start laundry shortly and energy is low as expected, taking the day off everything physical. Cats are enjoying smoothies though I may have put too much water with the food, that will be all right.
Not sure what I will have for breakfast, I have to say I am not a fan of the plain ground beef. Prefer the frozen sausage rounds or even frozen hamburgers as they are already seasoned. Will have to season different ways and mix it in with my beans or put in with whipped up eggs and cooked in sandwich maker. Not sure what else I am doing today other than housework.
I am still in pockets as needed and hope everyone has a good day.
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irish So glad you got your Ativan what a fight just to get that! Yes agree maybe ER with Neuro is the way to get seen by someone better than the 8 minute man. Good vibes for the PET today, yes you will do it!
Emac Glad your breathing has improved and you feel a little more settled. Everyone has their moments and you needed to have yours also. Give yourself credit you are going through a very difficult situation. I'm sorry about work, it's just not fair that this disease is a thief for sure. Happy to hear you are doing something you love, baking. Hope your bread turns out yummy.
Shana Hoping Bone Scan went well, fingers crossed.
Dodgersgirl Thinking of you, hoping your doing ok.❤️
All ok here, finished SBRT and enjoying my break this week from Xeloda. Nice to have the break for sure but kinda a tease in a way also.
Hi to all here and wishing you a peaceful day.
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Hello all.
The nausea & bowel unpredictability is really rearing its head the last few days. I do not throw up, but I have almost constant nausea. Feels like when I first started Lynparza. I actually skipped my evening dose last night. It was time to take it and I just didn't want to, so I didn't. It didn't really help the nausea to not take the dose. I think it was just I mentally could not take it last night with knowing it is causing the GI symptoms. I am sure missing 1 dose was no big deal. I do have Zofran here at home, but I don't want to take yet another pill. So I am hoping the stomach calms down on its own soon.
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Irishlove - one would think that in Florida, where the population is booming, that health care would be as well. Heard some interesting statistics: Florida is having a difficult time attracting docs because of the restrictive policies (although I think that is more an ob/gyn problem). Also, there are more docs coming out of medical school but not enough residency positions for all of them. That’s because the federal government restricts the number of residency programs! Makes no sense. We have 3 major hospital systems in the Milwaukee area and I swear there’s a clinic popping up almost as frequently as a Walgreens🙄. The competition is fierce. I’m so sorry you are struggling to get treatment. The neuro you saw should be written up for failure at patient care! Totally inexcusable. Sounds like your best bet is the ER with neuro on staff. Here for pocket duty as you traverse this calamity of care. I will bring some cream puffs from the Wisconsin State Fair. They melt in your mouth😋
Emac - your resolve in dealing with your health has always been admirable but you are certainly allowed to feel the weight of your situation. You made the comment that you’re not dealing with as much as others - maybe or maybe not. But right now you are dealing with progression and the changes that come with that. So allow yourself the luxury to say WTH or WTF. MBC deserves all the tirades we can throw at it. And then to appreciate the peace that comes with shouting our last anathema.
Sending healing thoughts to those struggling. Mel - more Theo pics please!1 -
I apologize for being a little late to this but wanted to send my condolences to @dodgersgirl. I am so sorry about your husband. I am thinking of you.
Mel- please send more pics of your dog. He is precious!! :)
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Good morning, all.
Wow, I'm so glad we have mel's living room where we can just "be."
Irish, you continue to be in my thoughts. Cancer with all its baggage is enough to deal with without adding healthcare providers issues.
emac, I say go for the sourdough starter project and blood sugar be damned! I can smell your starter as a type this.
I'm having trouble typing this morning, so I may be just a lurker today.
Love to all,
Carol
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Hey everyone! Thank you to all of the ladies in my pocket yesterday🥰 my scans went well I had a chest abdomen and pelvic CT first before the NM Bone scan everything came out NORMAL,UNREMARKABLE, CLEAR, and. The Mediastinal nodes were decreased in size. Everything else is unchanged from April scans so I am STABLE!💯. My oncologist will be happy the treatment is working😊. I actually got my results on MYCHART while we were driving home from the hospital on my IPad..
@irishlove I’m sorry about your ear ringing caused by the MS. UGH 😩 I get that too but am wondering if the ear roaring is from the treatment meds. If anyone else deals with this as a side effect please share.
@candy-678 there must be a nausea med you treatment team can prescribe for you. I’ve never had continuous nausea because they prescribed nausea pills for me to take. I hope this gets better for you. The rest of GI issues are so unpredictable.
@mara51506 thank you for all of your kind words to me and everyone here. You are very loved and appreciated here💗
@emac877 like @cookie54 mentioned, give yourself credit through this difficult situation.You are dealing with a lot right now.
@goldensrbest I totally agree with you, that neuro character should get written up for his lack of care and professionalism with @irishlove
@micmel mel tell us all about Theo.
@keris113 Hi girl, hope you’re feeling better today.
@sunshine99 I lurk too sometimes especially when I don’t feel like typing🩵
Have a great day everyone.
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Hi All. I have not been into responding much lately and you all seem to have it all covered, but wanted to celebrate with Shanagirl on her good news. Stable is great! Yay!!! Go celebrate big time!
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Shanagirl Congrats on stable!!!! So happy for you and the good news we all love to hear.
candy Sorry to hear your dealing with nausea. I hope your belly has calmed down since this morning.🤞
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Yay for stable scans 🎉
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Shanagirl- Yay for stable!!!
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Shanagirl - How wonderful to get such good scan results! You must feel sooooo good.
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Shana~yay for stable. Theo is keeping me busy busy! I’m exhausted!! But in a joyful way!
here he is with his sister
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Just so, so cute!
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Shana - yay for stable! And yay for getting your results so fast!
Emac - you have so much on your plate.
Irish - thinking of you. I hope things are getting better for you. I don't know that I'd bother seeing the 8 minute doctor unless you have no other options.
Sunshine - why are you having trouble typing? I hope you're doing OK.
Mel - I have puppy envy. Theo really is adorable. We are not ready for another dog, but I love seeing all your pictures.
Candy - I'm so sorry you're having another wave of SEs from the Lynparza. Feeling yucky constantly and feeling tied to the bathroom is awful.
Lastly, It occurred to me that my sharing my self-talk and self-calming may have come across as diminishing or dismissive of what many of you are going through - which is much, much more than what I am dealing with right now. If it did, I'm truly sorry.
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Shana
Congratulations on stable scans!🎉
Cookie54
Glad the radiation is done and the lung mets were blasted to oblivion!
Candy
Sorry for the stomach issues. I was miserable with those for the first 3-4 months on Kisqali, even after a dose reduction, but things have improved. Hope they will for you as well.
Seeq
I never interpreted any of your posts negatively, but I appreciate your sensitivity to the status of your "audience". Very empathetic. Thank you.
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bad news— I will be released soon from hospital to a rehab facility. Can’t go home as hubby was my caregiver. Without him I can’t be alone as I am a fall risk. And can’t do stairs. They have the take me off cancer treatments in order for Medicare to pay for the rehab facility. So we had the hospice talk. Looks like I am approaching “the end”
Also just learned Medicare covers hospice but not the facility.
Very sad and depressed this morning
Hubby’s visitation is tonight.
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@dodgersgirl I private messaged you a few times, but I’m not sure you received them. My heart is breaking for you. I’m so sorry. I am sending you the biggest hug right now.
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Dodgers~I’m so very sorry my sweet friend. I am thinking of you and sending love and strength to you from the miles. I hope it works out smoothly for you. You’ve been through enough. Strong hugs are with you. I’m so sorry. For your loss
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