My Husband, My Life, My Love, My Family, My Cancer
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rk, definitely sounds llike a good appointment as well, in your pocket for future appointments.
I have Herceptin today so spending couple of hours there, cloths are already in the dryer. Not as much time for surveys or games but that is quite fine, music and youtube can amuse me while I wait.
I am not walking all the way but choosing a longer walk to the bus stop and home. If I wind up early, will take a longer walk around the hospital and check in after.
Stuffed from breakfast, 1/2 cup black beans, 1/4 cup beefless ground, 1/4 cup rice and shredded cheese. Put the beans, beefless grounds and cheese in the chopper and added some wheat bran to keep it from being sloppy. Microwaved precooked rice, beans, beefless ground and cheese mix for 75 seconds. Seasoned with chicken seasoning and steak seasoning with a little salt and mayo to bind, it was really good.
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Candy I wear the mask and one other woman bc her son has heart condition. I feel as if I’m watching where I would be in life, from the outside. I do find benefit in going to the mosque even though I separate myself and don’t eat either. If someone insists I eat I ask them to wrap it for me and I take it home. Warms my heart that you go again.
Rk2020 that sounds like a great appt. Wow.
Mara have a good walk back from treatment.
take care allTanya
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Tanya- Yup. It is a different feeling from church attendance before cancer and now. Like watching from the outside. I could have gotten a to-go meal from the dinner, but I did not this time. I may next time. So I can eat in the safety of my own home. But it is not the same as eating and laughing/talking with others around the table.
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This thread is so comforting! You all are like my college girlfriends. We stay in touch with each other, celebrate the good times, cry over the bad times, and sometimes, just say “Well f*#k!” when we get really bad news.
Mara, I’m glad you had someone who saw you and gave you a ride part of the way home. How was the pizza?
Candy, I agree with what mel said. Cancer is always lurking, even when it’s stable or “quiet.”
Mel, it hurts to lose friends. It just plain sucks…
Aj, I haven’t seen that movie. I did take steroids during chemo, but they just gave me lots the energy the days before, during and after chemo. I didn’t have to take them long term, thankfully.
Candy, I wrote in one of my earlier blogs about being given a “Reprieve.” Not an “all clear” but more like a stay of execution. We’re told we’re “good for now” but that bus is still coming for us. It can be hard to feel useful sometimes when our energy level is so unpredictable.
Emac, so good to see you. I’m sorry you wore yourself out to the point of needing two hands to hold a glass of water! I hope your visit with your friend is wonderful.
Tanya, I hope the PTs are kind to you!
RK, I’m SO happy your second opinion doc was such a winner and took so much time with you.
Hi to sf-cakes, mae, jo, cookie, irish, threetree, wneinwi, and anyone I missed.
Carol
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Sunshine- I just used that phrase this morning talking to someone about my stable scans— "a stay of execution for 4 more months". I know that I am not really THAT close to death,, but really talking about "a stay before… possible progression". But you understand the sentiment I was getting at.
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My Goodness Sista’s!! Lot’s to catch up on day to day😊. What stands out in my mind is @candy-678 and @micmel and their feelings of not being the same as before cancer. Girls I get that totally. Candy, i often beat myself up mentally for not feeling like doing more. That vail of constant fatigue is always there, and also what keeps me from going out more & my GI issues. Basically when I’m just wanting my “creature comforts” and staying in and being comfortable. I don’t run out to the mall anymore because walking an amount of steps makes my hips and legs ache. Going out with DH to our son in laws’ restaurant and sitting a the bar for drinks and appetizers, isn’t so appealing anymore because sitting too long on the barstools hurts the sacrum and tailbone.,. And the tiredness gets to me when we are out., I feel like I’m boring now too.
Mel I’m sorry you lost your long time friend to this disease.
So any being “stable” right now can change by the next scan and lab tests in 2 weeks. @rk2020 I’m glad you found answers and peace of mind with the Onc you met with. She sounds very thorough and encouraging. It means a lot when you are given confidence that you are being heard and taken care of. Sounds like you are in good hands and made a good choice in getting another opinion.💙We’ll, my eyes are getting heavy with all this typing and my DD is coming over for her birthday for Steak & cake. So good night for now ladies and thank you for being here for one another.💕
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Shanagirl—- 👍️❤️
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enjoy your steak and cake. Sounds good to me. So my dd is officially divorced, poor thing tried her little heart out. It’s for the best. She just didn’t understand being a jehovas witness was all about when they got married. It’s all come full circle. So now comes healing. She’s already has a nice boyfriend. It’s just she’s taking it seriously and not rushing anything for any reason. She’s just having someone treat her nice and is an old pal from middle school. So that brings some friendship in there which I like. I just want her to be happy. And she wasn’t. Life is hard enough already ! Thinking of you all hoping you’re ok . Sending hugs to all and reporting for pocket duty as needed
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RK, what a great second opinion experience you had! That doctor TOOK HER TIME with you, I love that so much. Really hoping that your next treatment works fast, it's heartening to hear that she thinks it could.
Emac, thinking of you and how crazy busy your job can get. I recall you were off for a bit recently, does it feel at all possible to leave altogether or work less? I know it's not an option for everyone. I'm realizing how much energy my job has been taking from me, even though I've (mostly) loved it.
Irish, did you get your CT scan results?
Mara, herceptin day for you, wondering if that takes a lot out of you on treatment days. Hope you're doing okay.
Candy, I'm glad your scan results are stable, and I agree so much about the not feeling well even though the cancer is quiet. This is the hardest thing to explain to other people.
Mae, a kitchen by Thanksgiving would certainly be great! Love your agenda of watering plants, sounds like my kind of day.
Thank you so very much to everyone for your loving and supportive comments, Seeq, Eleanora, Cookie, Mel, Shana, Sunshine, Tanya, and everyone else. Even though we haven't "met", you're all very real and dear to me.
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Hi everyone. Hope you are having a good night. Lots of storms just north and northwest of us, so be safe. I watch Ryan Hall Y'all on Youtube TV for weather. He's quite informative.
Mel, I'm so sorry for your friend pulling the ghost routine. It sure hurts, I wish that person would have taken time to learn and love better. Your DD sure made the right decision, IMHO. I don't criticize religious beliefs, but if she feels less than, well she needed to move on.
Just viewed my chest xray on patient portal from ER visit (Friday to have pleurex cath removal). I haven't rec'd the CT scan from Monday just yet. Says nodules are stable. But good news that the 6 cm tumor in pleura is now 2.6 cm! Hopefully the CT scan will show even more improvement. Getting greedy here.
I had my visit with GP who is so dedicated to his profession. He worked on trying to get around Humana's restrictions for certain meds. I need Amitiza for IBS and they won't approve it and I can't afford it. Linzess does not work. He's trying again to get approval but if not he recommends using Zofran for the nausea end of the attack and stool softeners for other end of the problem. He writes a script for me for Low Dose Naltroxone, even though Humana will not cover it. Off label for MS and I only pay 50 dollars a month at compounding pharmacy. Clinical trials are studying LDN for cancer treatment, also.
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Irish Love, If you haven't already, see if the manufacturer has a scholarship or reduced price program.
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wren, thanks I'll give it a try.
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Hi everyone, sorry I've been missing in action, my platelets are that low that I need 2 units of blood transfused and have to be admitted and given low dose steroids for an oedema on the brain so I can start chemo again, or I'll be taken off treatment and put on hospice which I'm not ready for because I don't feel unwell just unsteady on my feet.
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@kittykat9876 -sorry you have to go through so much
hoping the steroids and blood transfusion raises your platelet number and reduces edema. Allowing you to get chemo treatment.
in your pocket for this next step. Hope the time in the hospital passes quicklypraying for you
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thinking of you Kitty Kat. You’ve been through so much. I am in your pocket hoping your body starts to bounce back.
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Kitty - prayers that the steroids and blood transfusions do the job🙏🏻🙏🏻. Must be scary to be told hospice could be next step.
Irish - I tried LDN for my chronic lower back pain. Started at lowest possible dose and slowly worked my way up to highest dose. No pain relief but some crazy dreams (a known side effect). How does the LDN work for you? Actually met with a new interventional pain management doc yesterday. He believes retrying some SI joint injections would be worthwhile so we got those scheduled. He is referring me to a non-interventional pain management doc to handle pain meds. I don’t get very good relief from low doses of hydrocodone or oxycodone but when I was recently hospitalized I got dilaudid for pain relief and it worked better than the morphine they first gave me. I would like to try that as an oral dose to see if it helps.
Mel - wishing your DD happier times. Sounds like a smart gal who is already on her way to a better life!
Hoping today can be a good day for everyone here!0 -
Kittykat- Thinking of you. 🙏
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Shana, you are not boring, your body is letting you down. Don't ever let those thoughts get in your head. Do what you can do.
I am not doing a lot today, normal chores and surveys etc. Did have to play tech support for my internet. My modem's cable connector gets out of whack and it requires an adjustment, frustrating but fixable for now. Wondering if electrical tape could hold it in place, may try clear tape initially, can always remove it if it does not work. I am unwilling to pay more for internet at this point. I do think that one of the issues is that the cats like to sleep behind the TV, I have covered as many of the connections as possible but believe the wire gets pulled. At least they don't chew them.
Sunshine, pizza is almost gone, only a tiny piece left. It did taste good BUT frozen pizza for half the price is just as good if I add extras like shredded cheese and green olives or even ground beans and wheat bran to simulate ground beef.
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Just gave myself a good idea, just turn my black beans and wheat bran into a ground beef texture but save time by making enough for a few meals ahead, save time and extra dishes.
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Decided to go for my last slick of pizza, shredded cheese and onions added and little bit of garlic bread as well also with some shredded cheese. Adding a small ranch dip as well. Should be good. Just put it in under the toast function since the pizza was already made.
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Picture it, London, ON, 2023, a woman surrounded by two fierce cats looking for food while eat breakfast. That is what it felt like as I was eating, they love garlic so when I finish they demand that meal from me, have to switch plate from one to the others or fisticuffs will ensue.
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Good Morning Sistas ☀️
@kittykat9876 I am so praying for you in hope that you get thru this. Sending gentle hugs with my prayers 🙏. @micmel I know your feelings in your heart for your DD. My girl also finally divorced last year after being married 17 years and then separated for another 12 years. She was married to a man who lied and cheated on her from the wedding day and throughout the marriage, on the day of her wedding my DH said to her as she se stood in her wedding gown, “you don’ have to do this, I will just write this off as a bad business deal” she looked back at him, beautiful in her wedding gown, and said “ but I Love Him,Daddy”and so he walked down the isle holding her arm and I looked at his face as he held back tears as he walked her to the groom. I knew what DH was feeling.😢. Mel, Her groom was also JW the son of a JW elder.🥺,
@mara51506 ♥️♥️♥️
Wishing you all a good Side Effects Free Day. Love to everyone!
💕 Barb
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@kittykat9876 Thinking of you and hoping you can start chemo again soon. Hugs.
Mel - it’s so hard to see your child in tears but I’m glad she is out of an unhappy situation and can move forward with her life.
irishlove - congrats on the drastic reduction of your tumor. I look forward to hearing more good news. 🤞🏻You deserve to be greedy!
I’m at the infusion center and about to start Enhertu #1. I’m excited and tearful and hopeful and scared and an emotional wreck. I don’t know why this treatment is hitting me so hard emotionally but I’m just going to try some relaxation techniques and roll with it.0 -
Take 2 -I have now met my favorite infusion nurse. She is upbeat and has metastatic breast cancer so she can relate very well. Even though she has 6 patients today, she must have sensed that I want to know everything going into me. She explained everything in detail. She had even read my chart in enough detail to know Ive got a jaw issue and liver lesions and that I’m HER2 low vs being HER2+. Honestly, I’ve had doctors spend less time reading over my chart. Her whole demeanor put me at ease.
Do you know that poem Footprints? I think God sent my second opinion doctor and this infusion nurse to carry me for a bit. And now I think I’m ready to walk beside them again.
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Candy- yay for stable scans.
Irishlove- yay for decreased tumors
RK2020- it is a scary thing to start a new treatment . It sounds like the nurse was a godsend to ease your anxiety
Mel and Shanagirl- happy to hear your daughters are in a much better place. My sister married into a Jehovah witness religion. She has been married for over 60 years although all 3 of their kids left as soon as they got married. My sister still has a strong relationship with them and although my sister and I have had many discussions on the religion we still have a loving sister relationship. We agree to disagree.
Kittykat- praying that the blood transfusions and steroids allow your body to continue the treatments .
Took another tumble out our backyard. We put Belle on a long lead because we have no fencing out the back . Let's just say I was on the wrong side of the lead when Mr fox decided to walk across the path to our neighbors. Belle took off and I went with her! Bruised and battered I did manage to get up and get my husband. I think he was more worried about the dog. Still bruised and scratched up a bit with painful body but no broken bones.
Waving hello to all! May we all have a peaceful day with crabcakes and peach lemonade overlooking the mountains or sandy beaches
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Rk2020— 🙏
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Good morning, all.
Mel, your comment about your daughter broke my heart. I’m so sorry… I’m glad she has a new boyfriend and that is someone she knew from middle school.
Despite my swallowing eval not showing any issues, I had a major episode last night. I took a magnesium capsule after I took my two Tylenol PM, and my throat seized up so badly, I thought I was going to die (not really). It wasn’t my trachea, because I could breathe, but I had such pressure in my chest and any attempt to swallow ended up with saliva in my pharynx. It felt like it was trying to squirt out my nose. It took about 5 to 10 minutes to resolve. It sort of took the fun out of my evening.
Anyway, I’m sipping black coffee this morning and doing OK. I’m just discouraged…
Irish, congrats on the shrinking tumor in the pleura.
Kittykat, I’m sorry your platelets are low and that you’re being admitted. That really sucks.
Mara, leftover pizza is something I really enjoy. I, too, like adding more “stuff” to it. I hear you on the Internet/modem frustration. Saving time and dishes is always a good idea. I made a big pot of chicken-tortilla soup yesterday, but our fridge is full of the watermelon DH bought. The soup is yummy, though. I’ll put a lot of it in the freezer. The tortilla strips get added right before eating it.
Shanagirl, it must have been heartbreaking to watch your daughter go through what she did. How amazing of your DH to tell her she didn’t have to go through with the ceremony.
Rk, I hope your infusion goes well. New treatments can be so hard because it’s another journey into the unknown. Oh, and I’m so glad you have a new favorite infusion nurse. If nurses only knew how much they can make or break us.
I have a friend who is a PA. We went to college together and worked together at a summer camp in Yosemite. She tells stories of patients she encounters in the ER. Some are kind and some are total jerks. I often tell her how much GOOD healthcare workers are appreciated. I’ve had a couple of PAs who were awesome and the nurse I had when I was in the hospital with COVID was also amazing.
Anyway, sorry for the ramble. Waving hi to anyone I didn’t mention. I’m in the corner of Mel’s Living Room with a big container of chocolate covered almonds from Costco. Come on over!
Love to all,
Carol
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Shana Hope you and your family enjoyed your steak and cake. Sad story with your daughter, that would break my heart too.
mel Glad your daughter is on the mend, such a tough situation to be in. She will find her true love eventually
RK Thinking of you as you start Enhertu. Love footprints in the sand, yes you have your special guardian angel by your side also.
Sunshine Ugh sorry you are still dealing with the swallowing issues. What's the next step? You can't keep living with this.
kitty Sending healing thought your way, you have had enough lately! hugs
irish Yaaay for tumor shrinkage, awesome. Also sounds like your GP is awesome also!
Mara LOL love the cat vs woman comment, was picturing in my head….
livinglife Geez glad you weren't seriously hurt with the fall. Sounds like your pup was not having that fox on your property. My Lab would have went nuts, she is such the hunter and digger. Love her to death but the holes in my yard right now are ridiculous!
Big hello to all that are here and hope your hanging in there❌⭕️
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Hello to the living room! I am feeling better. I think sometimes I try to revert to the old me in my head forgetting that physically things have changed. It's a very frustrating thing trying to balance my limits sometimes. Not much on the agenda today. I got the floors mopped and have to go to the cancer center to get my meds. I think I'll drive out to the local farm stands and see if they still have any fresh strawberries. The last few packages I've gotten at the store have been disappointing. Mom wants to go to Costco so I will take her there for a few things. It's always fun to look even if I don't need anything.
Shanagirl and Sunshine99 I love reading your posts. You both radiate encouragement and joy in the way that you write.
RK2020 I am so glad to hear your second opinion doc and infusion nurse are so good. What a blessing! I love the Footprints poem. That has also brought me a lot of peace in all of this.
KittyKat you have had such a long road with your bloodwork and treatments. I'm glad you are feeling okay despite being unsteady when you walk. I'm unfamiliar with healthcare systems other than the one used in the US. Don't you get to decide whether or not you are ready for hospice?
Mel I am so sorry to hear your daughter has gone through such a rough time. I'm glad she's recovering and finding support in you and her new boyfriend.
Mara your cats crack me up. They sound like a couple of characters!
Hope everyone is having a good day.
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looking for pocket duty tomorrow, please.
Going to whine here for a bit. So worried about scans tomorrow
3 weeks ago CT scan was scheduled for tomorrow morning. But no availability for a bone scan so was told the Onc Office would continue to work on “something”.
I have a PCP appointment Tuesday. I have labs and Onc appointment Wednesday. Then if all is “good”, chemo (Taxotere) #8 Thursday morning.
My dad fell last week, spent days in hospital, yesterday was moved to a nursing home for a few weeks of rehab to see if he can go home or be moved to a nursing home permanently. We have been managing all these appointments and needs. Been rough.Now, for those who don’t remember my earlier post, I fell twice in April and spent a week in the hospital. I am having issues with what I call, “wobbly chemo legs” leaving me worried about falling. And with wobbly legs getting in and out of the car is DIFFICULT. My left leg also doesn’t work like it used to. I can’t lift it up or move it when on my back so will really have to depend on the scan techs to keep me from falling.
And, on Taxotere, diarrhea is a huge problem. 4-8 trips a day. So planning doctor stuff is always done working around Gi stuff.
Ok- on to my whine: hospital called today to confirm my CT scan for tomorrow and, SURPRISE— a bone scan tomorrow afternoon. NO ONE from Onc’s office ever called me the bone scan appointment. I have done these scans every 3 months for 2 1/2 years without struggling BUT I wasn’t on IV chemo with huge GI worries plus I used to be able to walk to the car and get in and out without issues but can’t do that now. Two trips in the car in one day has me terrified. Being at appointments for hours where using a public toilet with diarrhea terrifies me (I fell trying to get up of a toilet and wobbly legs makes that a real possibility.
I will load up on lomotil and Imodium pills tomorrow. I will pack a change of clothes.TIA
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