My Husband, My Life, My Love, My Family, My Cancer
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emac and Tanya !!!!!! Congrats 🎊. Stable
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Moth, just saw your question about wigs that I order, I don't usually go through Amazon but through Paula Young.
The link below is my favourite wig if you are going short, not sure if you want long hair It is cool in the summer and it looks like real hair. I recommend Spun gold or Soft Pewter because they have darker roots and look more realistic. Not too much you need to style, use fingers to bring it forward or wet fingers with water and bring it away from your face and you can see darker hair as well. It is the one I am wearing in my avatar picture as well. I also recommend a velvet band, it keeps the wig in place no matter what.
https://www.paulayoung.com/product/casey+whisperli...
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Emac and Tanya - Congrats on stable! That’s so great!
Mara - I’m glad things are slowly healing. Definitely take time to rest.
Mel - It’s so wonderful to have a place we can come and be our actual selves. Thank you for inviting us to your living room
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Katyblu, definitely still taking it easy, the arm pain sucks but is already much reduced from Sunday, warm compress to heal up the scabbing and new skin will help to. Keeping myself busy and eating more as well. Thank you so much.
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mara, thank you for the recomendation! I have headbands already so just checking out different styles. I will give myself till the end of day to decide - I have wigs I just wanted something different but I'm really kinda undecisive about it. But I appreciate another website to check out & consider.
saw my oncologist today & I'm good to go for chemo tomorrow. My bone scan results were in - nothing new except now they can see I did break my sacrum and part of my pelvis too in that September fall. The Sep scan just had a big white out & they couldn't tell what was happening but this time they can see it was broken. I have no pain there anymore. I think the fact that I kept walking really helped keep things healing well. Now if only my wrist would get to more normal range of motion.
I got even more motivated to get my wrist back in shape when dh had his heart troubles and I realized I need to be ready to do chest compressions. I'm not sure if I'd pass a BLS re-certification right now with this wimpy wrist that doesn't fully bend back. It's also messing with my yoga - I need to be able to do downward facing dog lol!
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Moth that was some fall you had to break you up like that.
Mara take it easy. Fortunately you have your DB and SIL.
I tried to keep my anxiety in check for the week wait after the scan but ended up crying it out in the doctors office- while getting bloodwork etc. thanks so much for the pocket duty guys. Thanks for the support everyone.
Tany
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Emac & Tanya - great news on stable - the word we all hope to hear.
I finally have my appt w/new internist tomorrow. He had great reviews so I’m hoping I like him.
Mara - continue to take it easy. Your arm will let you know when it’s time to return to more normal activities.
To everyone else - I love reading your posts. I think of you all often - a true sisterhood0 -
moth: I was totally shocked to find out that you hurt yourself more than you realized. That really was some fall. I am surprised that you were up and walking albeit with an arm in a cast. My favourite yoga pose after Downward Dog is Savasana. Ha ha
Hurrah to everyone with good scans.
Again thanks to everyone for your support after my meltdown. PET, MRI, Bone Scan --- all "indeterminate" MO's last resort was to order an X-Ray. I had that yesterday after my infusion. Depending on what it shows (and I am figuring nada since the biggie tests didn't) he might order a bone biopsy. That would be in early January. I am holding it together right now. I actually feel quite well but the upper arm has this weird itching, just had a vaccine recently feeling. Thanks to Big Pharm for making anti-anxiety meds.
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Hi everyone. I’m a regular, albeit quiet, visitor to the living room. I really need to change that … very difficult for us introverts. My pre-New Year’s resolution is to speak up more.
My heart is with everyone who is struggling right now. Mara, your resilience and strength just amazes me.
I am so happy today because I have finally started my second treatment line - Piqray/Fulvestrant. I have basically been off treatment since mid-October. Between waiting for tests, approvals, phone calls, med shipment and finally today’s oncology appointment … it’s been a very anxiety-ridden wait. I had decided on either a clinical trial or Piqray if I had the required mutation. It took forever to actually receive the test results so while I was waiting for that, I started the screening process for the clinical trial which is a 6 hour drive away. I realized today just how wound up I’ve been with all the appointments and worry about what my wayward cells were getting up to. Today, I was finally able to take a big breath and relax. It feels so good!
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Hi ilowen, I'm so happy you were finally able to take a breath and relax! I think it's a bit like being in pain so long you forget what it's like to be without, then when you are it's amazing.
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Welcome back Ilowen, thank you for thinking of me. I can just imagined how relieved you are getting on your treatment instead of having to consider other options. Glad you are here.
Speaking of being an introvert, I am a bit of an introvert in real life believe it or not, my posts say the opposite.
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Mara and Moth~ I hope your arms are healing quickly. Thinking of you both.
Katy~I so much wish In my heart our living room was real. But it does bring me comfort caring for you all.
Goldens ~ Hello! It is a true sister hood for sure hope you like your new doc.
Tanya, sending hugs my sweet girl. Sometimes we just gotta cry. 💜
Kris~Good to see you.
Elderberry~ we all have those melt downs. Wrapping you in hugs for support.
ilowen~welcome back to the living room!! Good to see you. Don’t be a stranger, it’s therapeutic to get our thoughts out. Hugs as well.
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Oh, my Tanya, I am always in your pocket cheering you on. Crying through a stressful time is normal I wish you did not have to be stressed, I wish that for everyone.
I have been stretching both arms, hands and fingers. Massive improvement in pain. Will keep it up and wear appropriate braces. Now if the giant scab would exit, that would be good.
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Just popping in with a glass of wine. And popcorn. Skinny Girl Lime and Sea Salt. My son thought it was called "Skinny Bitch Popcorn" so that's what we call it now.
Had my scans today. CT came back clear. Haven't heard about the Nuc Med bone scan. Have been having more pain in both hips and in my back. So, of course, when the tech wants to take "just a few more views", I wonder why. I did peek at the monitor and I only saw one area that was really lit up. It looked like it was in my pelvis, but what do I know? At least they didn't come running after me, waving their arms and saying, "Wait! We need more scans!!!"
They have a new CT scanner in the basement of the clinic. I used have to go to the hospital which was next to the clinic. So I'd get my nuc med injection, walk over to the hospital basement for the CT scan, drink the contrast, wait for an hour, then get the scan and then walk back to the clinic for the bone scan. Now it's all in one building, one floor apart and no more drinking the contrast stuff and waiting an hour. Pretty quick and easy, aside from the wait between the nuc med injection and the scan (about 2 hours). I bring my knitting, so it's not a big deal.
The only thing I'm going to miss is the awesome tech who works in the hospital CT dept. Fortunately, I like the tech who gives me the nuc med injection and then does the scan.
Hoping for "Stable" with the bone mets...
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Moth- Glad the bone scan showed nothing new. Hope you are now on the mend from your injuries.
Elderberry- Hoping the bone biopsy is all clear and this "thing" seen was purely nothing.
Welcome ilowen. Like Mel said, it is therapeutic to get our thoughs/feelings out.
Sunshine- Woohoo on the clear CT. Hoping the bone scan is good too.
Yesterday was a frustrating day for me. I was doing my 30 minute You Tube video exercise routine-- I mentioned it on here-- and 20 minutes in I felt like a balloon that deflated. We all know the feeling. I stopped the video. I thought exercise was supposed to release endorphins and help our fatigue. NOT. I also read that exercise is supposed to help aches and pains. Yet again, NOT. But I will continue exercising because I know it is good for the heart and lungs.
So I was ready for a nap with that fatigue after the exercises, when the phone rang. My PCP office. The nurse was having trouble with getting me financial assistance for my blood thinner. I snapped at her. Told her that this cancer is a full time job (also working right now with my MO office on financial assistance for the Lynparza) and that I just wish SOMETHING would go smoothly. I then called the company for the financial assistance for the blood thinner and was on with them for 50 minutes!!! They are looking into it and I should hear something next week.
Hopefully today is better.
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Candy, perhaps do a more gentle exercise, it should not leave you deflated. Try doing the same workout for a couple minutes, or 5 or 10, pause it, take a rest get water. Go back to it when you feel like it. It will have the same impact for you as doing all of the 30 minutes and should not leave you exhausted. You will get more benefit that way. That is what I find.
I am improving each day with the arm pain. Stretched the hell out of my hands and arms throughout yesterday and today and the muscles are releasing. I have not had pain relief yet and the arm is very tolerable. I think the stretching and self massage have really helped. My elbow brace is coming from amazon today so upper arm and forearm will be supported. Put the fear of falling to the back of my head. The worst looking thing is still the bruising on my cheek and the swelling under the eye and the ugly scab. Just putting a warm compress on it until I feel no pain there, then will apply baking soda paste a few times a day
Going out today with DB and SIL for some groceries. I may have to get them on my own as well, selection in the evening is not great.
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Thanks for the warm words everyone, they're very uplifting.
Sunshine, wonderful news about the clear CT. Hope the bone scan is just as good.
Candy, I have never experienced that endorphin surge of energy and good feelings during exercise. When I exercise, I feel like crap during it and crap right after. It's not until a couple hours later that I feel good and in the days following as my body gets stronger. In the long term, I do find it has helped combat fatigue but I have to be consistent or the fatigue rolls right back very quickly. I have to mentally push myself to exercise because of how I feel during it. As Mara said, doing what you can, a little bit at a time, is a good way to start.
Mara, I'm so happy to hear that stretching is helping the muscles release. That should help you feel more comfortable as the muscles continue to relax.
I took my first Piqray dose this morning. Hoping the SEs will be mild over the next couple weeks but only time will tell. I have a CT scan scheduled for December 29th so we can get a new baseline. I can't wait to see what the little beasts have been up to the last 2 months. My bloodwork is looking good and I feel well so hopefully they've just been having a lazy vacation.
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Sunshine, I do so hope for stable results for you as well. In your pocket for sure.
For those familiar with my rental problems, I sent an email to the new owners telling them they owe me a 60 day notice of rent increase come January. Not sure why I am worried about them not responding. I called a legal place for advice and they advised me that the old notice of increase is null and void due to the building sale and that these people need to increase the rent. My mind picks one thing to worry about. Thinking that if I do not hear from them, might just pay the new amount as do not want to put myself in a bad position when I am fighting to stay. Not sure.
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mara: Landlords. Renting. The uncertainty. When we managed to buy a house I was so relieved. My landlord was the bank and couldn't kick me out on some whim. I've had good and horrid landlords and I never want a landlord again. Our house is paid for and now we are spending a stupid amount of money of renos. I don't even want a condo until I must (should that occur before the Old Farts Home) Condos have rules and strata fees. And the 4 P's. Parking, parties, pets and politics. UGH
If you like the place and can afford an increase then stay. Moving is such an upheaval. Best wishes
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So called the new property manager by phone and she said that they could use previous notice given by former company to enforce the increase. She said the lawyer was wrong, to keep myself on the right side of the rent, pay the higher rate, only a 10.00 increase, not worth fighting over. If I find that they owe their own notice of increase, I will pursue getting money back.
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Ilowen, I love the way you say you can’t wait to see what the little beasts are up to. I am dreading to see what they are up to around the same time. Maybe I need to approach it with a sense of curiosity rather than fear. Hoping they are o vacation for you too!
Sunshine, great news on the CT scan!
Elderberry, how nice to have a paid off house! Our property taxes are off the charts here and constantly rising, as no state income tax.
Mara- glad to see you are improving! I haven’t exercised in about a week due to mountain cedar in the air, but need to do something soon, I can feel my joints getting stiff and weak.
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ilowen- Yeah, feel like crap during and after exercise. LOL. Have not noticed the less fatigue later though. I am on week 2 of the exercising. Today I finished the 30 minute video. I am thinking of do the 30 minutes maybe 4 times a week. Last week I did Sun, Mon, Tues, Wed. Paused the rest of the week due to schedule and ickies. This week did Mon, Tues, Wed, and today. Tomorrow is Lupron and Port Flush so may not do exercises.
Denied for assistance for the blood thinner med. Will cost me $50 a month for that 1 prescription. Will see what my other med refills will cost. Good grief.
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I have not walked since Sunday myself, gave myself a week off but getting stir crazy, should be shopping tonight.
As far as the new rate of rent, not going to worry about it, I'll just pay the extra and be done with it. The lawyer that said the previous notice of increase does not count may be telling the truth but the current property manager says the previous notice is the notice of increase. Not fighting for 10 dollars. The tenant board is not answering the phone and emails are unanswered as well.
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Moth - you were walking around on a broken pelvis and no one could find that on any tests? I'm shaking my head trying to imagine the pain. Glad it's better now, but jeez.
Tanya - I am sorry for the anxiety. Sometimes those tears, you just can't keep them back. Best to let them out. But still, physical problems coupled with emotional anguish, it gets to be a lot sometimes. Hugs.
Ilowen - good luck with your trial and I also hope your treatments have minimal side effects. Will you have to travel 6 hours every time you take a treatment? In winter? Ugh.
Elderberry - I am glad you are holding it together and hope it stays that way for you.
Sunshine - yay scan, hoping for more stable.
Mara - I hope your face heals quickly (and arm!). When my brother was a kid he and his little buddy were riding their motorbikes around and around a parked dump truck, in opposite directions and to no one's surprise they collided. As mom walked brother into the emergency room the other kid was being ushered in by the Doc to have his broken arm set. Brother's face was pretty busted up and an x-ray showed that he had fractured the cheek bone right under his eye. He had a black eye (faintly purple and blue) for about 6 months! So I think you will be fine walking once you get your golfing arm back in circulation, but be careful where you ride your motorbike.
Candy - all this talk of exercising and everyone talking about their yoga poses. Good grief. I'm feeling bad about myself. The closest I get to yoga is standing on one foot while placing the other foot into the pants I am holding. My big toe gets hung up on the crotch and this leads to frantic hopping, gracelessly, bent over, trying not to let go of pants while simultaneously stepping on them. When it comes to exercise I find I can get down on the floor but getting up again is a tactical maneuver requiring strategic pre-planning.
Does anyone make their own yogurt? I have been having adventures in yogurt making recently. Not sure how I'm feeling about it. I am interested in your method and what tools you have for the job. Lacking tools, I have improvised. I think my make-shift methods have worked pretty well.
Hi to all, riding along for anyone who wants the company.0 -
So my daughter had to take hubs to the ER last evening. I still can’t drive due to pain in my shoulder and my fatigue was to the moon. Hubs was having tachycardia with heart rate up to 180. ER doc tried a couple different meds and finally found one that worked. She brought him home around 2 am and he’ll have to follow up with his cardiac electrophysiologist today about restarting the med. So grateful to have moved closer to family. Although I’m sure our daughter didn’t think hubs and I would have medical emergencies this soon after moving in (neither did I🙁). Grateful for her❤️
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Goldens- Oh my. Hope DH can get on a med that works long term. Glad you are close to DD now. Hope no more medical issues for a while.
runor- Hahahaha. I laughed about your description of putting on pants. Me too. I have low back issues and hip and knee issues. I too struggle with putting on pants and maintaining balance. These "exercises" I am doing are low impact--- mainly marching in place with a few "steps" in between--- stepping side to side or doing a box step. Mainly to get moving and get heartrate up for a bit. I tried Yoga and cannot do a lot of the poses. And getting on the floor is hard for me too.
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Runor - I have been contemplating making my own yogurt. I have an Instant Pot that has a yogurt setting on it but honestly, i have had it quite a while and am kind of intimidated by it and only used it a few times. I might try to see if I can figure out that yogurt setting.
Yep Runor and Candy I have joined you in the pant yoga. Candy your limitations are pretty similar to mine. I try to at least walk over the noon hour in a store or something to at least get out of my office and move a little. My job involves getting out and about at times so some days I get out more than others. Feeding my horses involves a little bit of exercise but not a lot.
Sunshine - congrats on the good results!
Goldens - Sorry that your DH is having trouble again but glad you are closer to family.
Elderberry - I agree about not wanting to be a renter but I can see in certain situations, it may make more sense and definitely in certain areas of the world, it can be cost prohibitive.
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Goldens, so sorry about your husband, in his pocket and of course yours as well they got him settled down. Things work out for the best timing wise for sure like your daughter moving there. Glad your daughter was there and hope your fatigue settles down soon.
Sunny and colder today, probably going to walk today after I order some grocery items I could not get last night. I prefer using delivery service for the heavier items like cat litter etc.
My arm is still tolerable. I finally was able to notice a huge bruise on the underside of my elbow area, no wonder it was so sore initially, still painful but I take pain relief. Bought a velcro elbow brace but not sold on it and do not use the sling at all. Since we stopped at another store last night, I was able to get all giftcards I needed for Christmas so that is done and on budget as well.
Going to book an appointment for my booster covid shot. It was finally made available now that the optimus prime variant (joking) is taking hold here.
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https://www.dailymail.co.uk/news/article-10318991/...
This article talks about a study by Columbia University that the Covid shot and booster shot is ineffective against the Omicron variant. Just thought I should mention this.
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Runor~ you’re a trip ! Lmao
Goldens~ I’m glad he’s ok that’s scary stuff there ..
Candy~ hello darling. 💐
Mara and Moth~ how are those arms ?
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