My Husband, My Life, My Love, My Family, My Cancer
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Mae, happy for good scans, enjoy lunch with friends.
Intolight, glad you got some christmas stuff done, remember PACE yourself and ask for help if you can get it. All you can do, never call what you are concerned about stupid either. Minimizes what you are dealing with.
My breakfast was good, sort of a riff on egg mcmuffin except better. Was just the two hardboiled eggs placed on the naan and poached with some frozen spinach, just folded over and ate by hand. Yummy.
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Checking in. Always read along but forget half of what I want to say.
Mel- glad you had a good time with friend. Those late nights sure do a number on us. Great picture of you, your daughter and Theo.
Mae and Shanagirl- yay for stable!
Sunshine- hope you can start rads soon.
Candy- hope you are feeling better from the covid.
Mara- love the picture of the cats. As for the landlord, have you ever had a lease? If not then you would be on a month to month basis.
Love the pictures of Rome and Princess. Waiting for your granddaughter is so cute!
Belle with her winter coat. I don't know what she thinks of it but it keeps her warm!
I haven't been sleeping very good and feeling extra crappy this past week. Was supposed to head to town today to do more shopping but headed back to bed instead! Hopefully will be able to go tomorrow. Did have my scans and they were stable. I think I am going through depression relating to what we all feel of a life we once had.
Hello to SFCAKES, Intolight, Threetree, Irishlove, Tanya and anyone I have surely missed. Peace to all
Debbie
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Bellelove, yay for stable!
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Yay for stable Mae! And Belle! Good news Shana! So glad for good news. Hugs to all!
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Mel Beautiful pic of you and your daughter. Of course Mr Theo is alway adorable!
Mae Congrats of stable!!
bellelove Congrats on stable also! Always sad to think of our "lives before cancer". Hugs
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Irishlove, so glad to hear the MO took more time with you, that makes such a difference. And that he got your order for Ibrance submitted, here's hoping Pfizer will approve financial assistance for you pronto.
Mae, great to hear good scan results!
Bellelove, glad to hear that your scans are stable! I hear you about the depression, it's not like a stable scan means, hey, you can go off your meds now! Stable is great, and it's... just stable. I received one of those patient satisfaction surveys, and the last question was, "rate your health: excellent/good/fair/poor". That one question depressed the hell out of me, because my health is poor, how else could I rate it? Maybe next time I'll just write in, "stable".
Mel, what a lovely photo of you and your daughter! And Theo, too, that little adorable pup.
Tanya, I laughed at loud at the photo of the kitty waiting in the planter! Looks very snug.
Intolight, I like how you roll!
Mara, seriously, your cats are beautiful. And of course they want to be on your lap.
Today is one year since my husband passed, and I'm spending it in a quiet place on the coast, with a fireplace in my room, and gentle reminiscing about our years together. Grateful to be able to do this and honor our love for each other.
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@sf-cakes What a beautiful place to reconnect with your DH. And what a honor to have been loved and loved so deeply. I hope you were able to push the rest of the worlds' problems away and just be in the moment, reliving happy memories. Bless you and your DH, who I know had to be a very loving, gentle man.
Waving hi to all. So happy to see stable reports and living life for today. I try to get onto that mantra, but it's difficult. And at times my faith wavers, and I need to refocus on my beliefs. I love your stories and find heartache in what we have lost. I miss traveling to see family, and please don't laugh, but I miss high heel shoes. You know when you would get all spit shined, makeup, dazzling dress and a pair of heels, and off you go to a special show and dinner and dancing. Yes I miss dangling earrings and pointy toed high heels.
Well some more poopy news. I was promised Ibrance refill was taken care of and the paperwork submitted to Pfizer patient assistance. WRONG!!! I called this afternoon, after coming from dentist, and Pfizer claims they rec'd zero communications from Dr's office. So game plan, Pfizer rep gonna call first thing to MO's office. I have GP appt. tomorrow, so afterwards I'll be paying a visit to MO's office and if I have to hand deliver the paperwork to the head MO to sign and fax it myself, by God I will do it. I was so angry at the lies being told that colitis popped up and now I'm sick as all get out. Stress is murdering me. Plus I need a root canal and Humana will not pay for it. $2000! I'm gonna end the day with being thankful for my DH. He listened, he was angry, also and he plans on speaking up tomorrow if necessary. Hope I don't get fired from the practice.
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Irishlove-Hope that your paperwork gets straightened out. How frustrating! I am being switched to Humana PPO January 1 and am nervous given your experience with them. I totally relate to your missing high heel shoes. I now usually just wear low heels- 2" at the most if I am dressing up. I went to a wedding in October and wore a pair of my higher ones. Well, first of all, my feet keep growing, I guess due to Letrozole. I was in so much pain that night. I could barely walk. On the way home, I stopped and bought a pair of cheap slippers b/c the pain on my feet was unbearable. I am shopping around for a new pair of heels b/c I don't want to give up. I think I need a very wide toe bed or something. Pointy toes are out for me forever.
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Great to hear of multiple stable reports!
Candy - how frustrating that for all your efforts to keep from getting sick, it still slipped through. I hope the Paxlovid helps and your are feeling better quickly.
Irish - I`d be fit to be tied. I hope you get it all squared away and a big fat apology.
I loved wearing heels! But I gave up on them years ago due to a Morton`s neuroma. Now they have to be very low-heeled and wide. Chicagoan, FWIW, an old coworker of mine swore wedge heels were much more comfortable than spike heels (my fav`s), if you're determined to try.
Mel - how nice that you had a good visit with friends, and how awful trying to deal with your mom's situation from afar.
SF-Cakes- you're so smart to plan quiet, personal time for reflection on this somber anniversary. I hope it brings you peace. Hugs.
I think we all feel our loss of energy more at this time of year; there's so much extra to do! It has taken me several days, so far, to get my Christmas decorating done, and I have a very small house! We don't decorate outside at all. All I have left is putting ornaments on the tree and getting the guest rooms ready for visitors. My sister and her hubby will be here for a week starting Saturday, then my daughter comes in the day my sister leaves, then my stepdaughter and grandson will be here for a few overlapping days after Christmas. I'm excited to see them all, and hoping I can pace myself to keep it all fun.
Waving to all
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I am on month to month but rules for forcing someone out are quite strict here which means if landlord wants to evict due to renovation for more money, the only reasons would be for rent not paid or moving family in and it is not that simple. I am month to month but 30 day notice to quit would not stand up since reason is to charge more to the next resident. Any way sliced, if kicked out, I would have no where affordable to go. 110 to 1 year waitlist, so my answer will always be no and I would take them across media and back to the government again as well to expose. I don't think it will come to that but we will see. Day by day for me.
Having a quick breakfast before MO app't. Routine check up, taking Paratransit there and unsure whether I will need to cancel trip home, booked it for 12 pm but may take too long, eating a pasta meal for breakfast. Only slept a couple of hours, been off schedule due to naps that come over me in the evening. May have to start heading to bed much earlier but that is fine.
In everyone's pocket and hope everyone has a good day.
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Such wonderful news from Shana, Belle & Mae with stable reports!
Mel - such a lovely picture of you and your daughter and that cute Theo.
Sfcakes - what a charming place to sit and reflect back on your dear husband and your life together. May your memories bring you comfort and peace🙏🏻🙏🏻.Irish - such bull💩. It is totally unreal. I’m sorry that the unnecessary stress (like we need more than we already have) caused a flare up of your colitis. Take lots of deep breaths as you address the incompetence! I get you with the shoes. My feet are so bad that all I can wear are comfort type shoes. Thankfully styles have improved in that realm but I would love to wear a nice dress shoe!
Waving hi to everyone else!
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mara, I'm glad there are some laws in place to keep those jerks from evicting you.
I feel like I'm in limbo-land here. Waiting on approval for the radiation, waiting on approval for Truqap… Will see my MO today. I did message the RO, but haven't heard back, which is surprising.
On the bright side, we had a wonderful "not-at-our-house" Christmas party on Sunday. Our neighbors hosted it for us, and I felt SO much love and support from everyone there. I had so many people tell me how much they loved my blog. That makes me so happy because the whole purpose of it was to share with them what was going on with my cancer and also to let them know that we weren't living in misery—even when things sucked. I'm touched and humbled and a little bit embarrassed at their kind words.
I'm thinking of titling a blog, "Why Me?" But the "Why Me?" would be about how I got so lucky or blessed to be surrounded by such loving friends. So many don't have that and I'm grateful beyond words to have such an amazing support system—not only for me, but for my dear husband.
Gotta run. Mara, I'm craving hash brown patties. I may make a grocery store run to see if I can find them. If not, I'll ask DH to make a Trader Joe's run.
Love to all,
Carol
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Sunshine, yes, the rules are strict here about how and when people can be renovicted. I think most of us would be out of our places so landlords could slap a coat of paint and charge hundreds more.When I got back from MO appt, just routine one, I met my neighbour from upstairs and she pays more and her place has no functional closet, she chose it as a furnished place with washer dryer unit and dishwasher in the apartment but there are no closet doors except the linen closet, she thinks her place is smaller and pays electric as well, rent for her is extra 550 over mine as well. Crazy. I showed my laundry setup and she is surprised I take it out when showering but I said, easy enough to do. I suggested she ask them to give her a closet door in the living room closet and if they don't, get an inexpensive full length curtain at least so she does not have to leave it open. Her kitchen is smaller than mine as well which is weird. She is a lovely person who is new to Canada from UK but I don't see too many peoplle from here, enjoyed the contact in person.
I enjoyed meeting neighbour, both rides on paratransit, drivers are super nice and the MO app't good. I did mention that I did feel just fine and no ill effects from the blood as we keep an eye on it. Very chatty day with various people which was quite nice. Order couple meals from burger joint, not feeling the cooking.
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Yay for stable. Lots of us recently had scans. Good scans. YAY. Of course sorry for those with progression. I hope you get a new treatment plan soon that works wonders.
My scans were stable. MO on monday.
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Waving hello to all you lovely ladies during this Christmas season. DGD and her Daddy did most of the decorating, but I managed a few items. Usually it's all me and I over do it. The torch has passed. lol
Well I'm happy to let you folks know that Pfizer refilled my RX today, 2nd day shipping it to me. They also rec'd the Patient Financial Assistance paperwork. Won't know their decision until January. I don't know if it was the M.O.'s office at fault or Pfizer but it's finally fixed. As for Humana, I'm Medicare Advantage HMO. I use to have Humana PPO and it was a much better plan, IMHO.
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XGEVA ANYONE?? I NEED SOME ANSWERS…..I POSTED THIS LAST NIGHT👇
Im sorry, I just skimmed through everyone’s posts and so I’m not commenting yet. I’m kind of freaking out at the moment.
It’s late and it has been a long day and I’m feeling very anxious, annoyed, frustrated and fearful. I had my appointment with my oncologist, which was very good. I went there with a gift for him. A painting I had done of 2 Budgie love birds. it has meaning because he always walks into the room greeting us as “the lovebirds” affectionately. He went over my scans as all being stable which makes him happy. My husband chimed in and asked him if I would be able to reduce the dosage for my Verzenio so I could have a better quality of life because of the extreme tiredness and the GI issues with the nausea and D. My Onc said I Gould reduce the 150 mg to 100mgs twice a day. Then his assistant told me she would have my prescription brought down and I could go into the chemo lounge for my Xgeva & Fasoldex injections after checking my wrist band. After the consultation was over, I felt I wanted to ask onc a question but forgot what I wanted to ask him. When I saw the tech who was going to give the shots she asked me about any issues with jaw pain, then I remembered I wanted to tell my onc I was scheduled next week for a root canal with my dentist and if it would interfere with the Xgeva. The tech said I have to stop the Xgeva shot for 3 months before the dental procedure and not take it until 3 months after.So I didn’t get the Xgeva shot today. I left so upset inside for such a major change in my treatment schedule. I’m very anal about my medications consistency and the sudden change has me so irritated and panicky. I’m going to cancel the root canal so I. Won’t interrupt my bone met treatment. I want to call my inc to let him know thi so I will get my Xgeva next month. I have no pain in my mouth and don’t want to have this root canal. Has anyone dealt with dental issues and interruption of Xgeva?
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Shanagirl, yes I had been taking xgeva almost 4 years when I needed 2 rootcanals. I became very anxious with the pain thinking I was developing Ostenecrosis of the Jaw. My bones weren't the best from the start due to a hysterectomy 35 years earlier. But no problems since.
Yes I got my scan results from last week. Still stable! YAY.
But you are in a different position. The xgeva is not really a cancer treatment. It makes the bones harder and the cancer cells don't attach as easily. The xgeva is good in your system for several months. I would definitely go for the root canal asap. Which was a piece of cake btw.
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Wow, so happy for all the stable news. This is a reason for celebration!
We got four inches of snow last night and our DGD has a snow day today because it is still lightly snowing and visibility is difficult. The entire town is shut down for the day. Thankfully my DD got home safely from work this morning and doesn't have to go in until Sunday. Retirement means I don't have to venture out in this mess. Of course two years ago we lived in San Diego and I would be walking the beach instead. What a difference!
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Thinking of everyone’s good news ! Thinking of those with progression. I saw my palliative care doc today and she’s recommending a 3 month break from treatment because my mouth has become so severe. I’m going on fentanyl and ketamine. Don’t know how that’s going to be. But I have a big decision to make. Nothing is ever easy. I think of you all daily.
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Shanagirl, it is upsetting when treatment is on hold and I don't blame you for cancelling the root canal if your teeth are not feeling bad. We decide which things we can live better with either get the root canal or miss treatments or take treatment and delay the root canal. We may not always know if what we chose is actually better, it always will be better if it makes us feel better.
I am presently drying clothes, and making up some wash soda, just some baking soda, baked at 400 F, when cooled down, mix it in a container of borax and oxiclean. I use regular detergent in a small scoop and a scoop of this stuff, save the heavy duty oxyclean if there is a stain to clear. Got the TV earning some money as well when asds play, it does mostly cooking videos and sometimes I get bored and watch a channel with golden retrievers called Tucker Budzyn. They are enjoyable as well.
Possibly will shop with older brother tonight but need to change anyway. Setting a STRICT budget, actually moving funds to a debit card and sticking to that instead. Keeps me accountable to what I am budgeting for groceries, if I say 25.00 then that is what I mean. Also think of different salads like lentil and bean salad, can still throw in the beans but lentils and other things.
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Mel, I have been thinking of you. Things are not easy, and sometimes just rotten. I pray you will have peace with your decisions.
I have been crying off and on all day. I have been trying all week to get things done for a simple dinner for family. I used to host large dinner parties and arrange mega-parties for the church, but now I can't even dust my bedroom. Had a meltdown. My DH came in and finished for me. Perhaps it is time I asked my MO for some help. The problem is I am not scheduled to see her for another month as I have been doing well. Ha… our version of well and the world's are very far apart. Sorry to vent, but you are the only ones who understand.
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I have been reading along. Congrats to the ones with stable scans. And so sorry to read of the struggles of others.
I am on day 9 of Covid. I guess I got thru it pretty well, as not sick enough for a hospitalization, which I feared. I was pretty miserable for several days— temp, chills, cough, nasal congestion, etc. I am restarting Lynparza tomorrow (day 10) as fever is gone and only a residual cough and some runny nose is left.
I know I have mentioned this before on here, but I wonder if hunkering down as I do is not really good for me in the long run. Let me explain. I was talking to someone on the phone today. I mentioned that since I am almost over Covid I should have a natural immunity for a couple of months now, and that I thought about getting out more for the next couple of months. But then I rethought it and decided I should not, since RSV and influenza are also circulating in our community. Not good if I catch one of those illnesses next.
The person said, "well you need to build your immunity up, so you should not always stay away from people".
Is he right in a way?? Our MO's say we are immunocompromised and we need to be careful in the cold/flu season, but are we making ourselves more susceptible by not exposing ourselves to some germs??
I feel like the boy that lived in a bubble— remember that story?
I will probably just be glad I got thru Covid this time, and still hunker down to prevent any illnesses in the future. But, what do you all think??
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I think that's a difficult topic in some ways, @candy-678. By not exposing yourself, yes, you are avoiding building up immunity but the idea is that since you're immunocompromised, if you were to get sick it could result in severe symptoms, which could be difficult/take longer to recover from, and delay treatment. That's why it might make more sense, depending on what your oncology team says, to get maybe the flu vaccine rather than exposing yourself to someone who has the flu. That said, I think the topic you're bringing up is something that should be discussed. How does one balance quality of life (socializing, getting out more) while having metastatic breast cancer? A fair amount of that decision-making is really based on your comfort level with risks vs benefits, and how you can take precautions to minimize those risks. Also getting physical exercise can help improve other side effects from treatments. I know for one of the young adults in the MBC Zoom meet-ups we have has been struggling for a long time with managing her chronic pain. More recently, she's been fitting in exercising to her routine in spite of fatigue, and she's experienced significant relief from her pain in a way that wasn't previously being managed by the pain medications. I hope that helps and definitely a good topic for people to weigh in on. :)
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@shanagirl I have a root canal scheduled for Tuesday. No choice in the matter as I have an infection on that crown. Both dentists (saw 2 to make sure I need it) said it's safe as we are not extracting a tooth. The MO said skip one month of Zometa.
@micmel I'd say that quality of life is being severely affected and you have been on treatment many, many years. I'd stop systemic treatment also, if there is no other treatment plan to help with your severe mouth sores.
@intolight This time of year is difficult when you are the matriarch. I'm so sorry you struggle with this damn disease. May their be better days ahead.
Waving hello to all the lovely ladies (and gents). Colitis is striking again, but not as bad as first attack. I read that Amitiza (I use this for IBS-C), can lead to colitis. Ibrance has also been associated with colitis. My diet will have to change drastically and I'll talk with new MO (whenever he arrives). Maybe drop from 100 mg to 75 mg??
Due for severe weather starting Sat. night, covering most of Florida and then heading along the east coast. If named, (it will be sub-tropical in nature) called Vince. Flooding and high, gusting winds are expected plus a risk of tornadoes. Time to batten down the hatches. Please be safe all in the way..
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Irishlove- I'm just curious, because I was told I had IBS-D in the past. How can you tell the difference between colitis and IBS-D?
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Candy, I tend to think like your MO. During the early days of Covid I was very cautious, especially being on chemo and having a severe vaccine allergy but my MO never advised anything more than good hygiene, Vitamin D, Zinc and avoiding known sick people. When I did eventually get Covid, I it past the worst of it within a few days with OTC cold/flu meds, now I have some good immunity. I don’t go looking for trouble but I see friends, travel, dine-out, etc. It’s necessary to be safe but also important to live and enjoy ourselves, isolation and loneliness negatively impact our health. Your MO seems to be encouraging balance in that respect.
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@seeq Hi gal. I have had IBS-C for 50 years. It strikes me in the lower abdomen and I double over the toilet. First is horrible gas pain, then vomiting and then finally diarrhea. My body temp. goes up and sometimes I have passed out. Years of suffering I attributed to a. greasy foods b. garlicy foods. c. stress. Plus I found that if I ate food even slightly old or tainted, DH would pass gas and I would go to the hospital for a shot in the butt. It subsides in a couple hours.
Now colitis is new to me. It feels different in that the whole stomach rumbles and grumbles. Then I feel pain in the whole abdomen. I develop diarrhea that (TMI) includes part of the lining of the intestines, has a very foul ordor, lasts for days on end. The first attack was last month and I was in really bad shape, so hospitalized with dehydration, low potassium, excrutiating pain and diarrhea and vomiting non-stop for two to three days. There is also blood in the stool and puss from infection. Colitis can be caused by different things, including C-diff, beginning of sepsis, food allergies, medication and the biggy, stress. I need to speak to a nutritionist to get a handle on this.
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Candy, I dont think it's healthy to isolate yourself. I think much like illimae said.
The loneliness can be so depressing. I take my vitamins and supplement extra d and zinc and magnesium. Got me some vaccines. Go out for a walk. And wear a mask in crowds. You only live once. What kind of life is it if you don't get out and enjoy it a little? We're you told to stay away from everyone?
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shaagirl Sorry you're dealing with this it's all so frustrating! Hope you find some peace and answers.
Irish So happy to hear you got your issues resolved with getting meds. Good luck with your root canal..always something isn't it….Hope your change in diet helps the colitis.
intolight Wrapping you in a big hug, yes we all know that feeling.
Candy I agree with the Mae I am somewhat cautious but still living my life. I also had covid last year and fared ok on paxlovid. My white count etc have been good and don't consider myself to be severely compromised. I practice safe hand washing and hand sanitizer everytime I come in contact with frequently touched things. Try not to touch my face etc, you know the drill. I have been going to church on a weekday rather than Sunday as there is only a handful of people there. Do what seems comfortable for you.
Mel Sorry your mouth has gotten worse, can't imagine as I get one ulcer and it's uncomfortable. Sending peace and strength.
mara Everything is so darn expensive anymore it's tough. If anyone knows how to be creative and stretch a dollar its you! Hope you enjoyed getting out last night and found some good deals.
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No, I was not told to stay away from people, per se. I was using what I thought was common sense.
We are in a surge of respiratory illnesses right now in my area, I know several people with Covid and also negative for Covid but positive for the flu. My first thought was "hey I can't get Covid again for a few months (immunity) so I will get out". But common sense tells me I can still get flu or RSV or stomach flu or whatever. And I think it would not be good to recover from Covid and then get down with another virus/germ. Stresses the body, and have to pause treatment again.
To clarify, this person was not my MO that told me to get out. I need to specifically ask my MO his thoughts, as I have a new MO since October. And I have not asked his stance on the subject. I was just saying that doctors (and my previous MO) usually tell the immunocompromised to get their vaccines and stay out of crowds/sick people in the winter months. Why tell cancer patients that if we need to "not isolate, get out"? We should just act like the general public then? Not curb our activities in the cold/flu season? When you are out and about, you don't necessarily know who is getting sick, or been sick recently, and spreading germs. The more contacts the more the chance of spread.
I am still going to hunker down. Last summer I got out more. I will plan on doing that again. I don't enjoy being sick— fever of 102 for 3 days, coughing my head off, feeling like death warmed over. Going to a party or out to lunch is not worth it.
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