My Husband, My Life, My Love, My Family, My Cancer
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Candy, I’m so sorry for your loss. Sending a virtual hug.
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Candy that is shocking and emotional for you. I know here they only allow ten people for funeral gatherings but it’s FL so I doubt people follow all the time. Maybe you can go to the graveyard afterwards and pay your respects.
Mara hope your appt travels are uneventful and that everything goes well. I force myself to do activities in the yard, pool bc I gain weight easily and submitting to the SE’s of fatigue is annoying. I am grateful for the pool though.
Mel I remember when you did your DNR. I was inspired but did the procrastination thing. I was talking about it with my DH the difference between resuscitation and Covid intubation. Any thoughts?
Booboo are you starting treatment soon
Everyone else thank you for the support and have a wonderful scorching hot summer day!
Tanya
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Tanya, thank you. I woke up early today so did half an hour walking on the treadmill. I assumed my bus would get me to the app't but found out the bus had already left, schedule change. I walked to the hospital, got my chest port access at cancer clinic, walk up other side of hospital and then walked back to cancer clinic again. Good amount of walking so far today. Did not tire me out, just made me a bit hyper. CT scan was fine, will probably get results over the phone since I do not see doctor until Aug 12. Would be surprised if anything is going on but will leave the possibility for it. Not to anxious and slept well last night. Cooling off and then off to get some lunch and a chocolate treat as well. I will say, putting on the mask after the walk, I sweat like a pig at first until I got acclimated. My mask was soaked, had to get a replacement. Oh well, small potatoes.
I can also understand what you are saying about forcing yourself. In the morning, nothing would make me happier than sitting and filling out surveys but my butt says that is not a good idea and I am not interested in a diet. I am actually going to institute a 10 pm bedtime and that way I can wake around 6 and get at least half an hour in on the treadmill. It makes such a difference for me when I move. Just have to find some strength training for my arms as well. Got the cardio down for most days. The heat does not bother me anymore and I am using the UV blocking unmbrella. Like feeling like I have constant shade.
Edited to add, this was an exceptional day for walking. I did another walk to get some chocolate as I was sitting around but bored. Slathered on more sunscreen, skipped the umbrella because I actually forgot it. Took about half an hour. Weather feels like 91 versus over 100 so it did not feel too bad. Other than sweaty and red, feeling pretty good. Feet are starting to protest so that is all the walking for the day today. Hoping I can do this tomorrow too. I would like at least an hour in a day but if my body lets me do more, I will keep it up. I have chemo infusion Wednesday this week so I will probably walk there and back for that too. My brain jjust feels better after moving and it makes me realize I am not a delicate flower and can do a lot more than I expect. Tonight, I have laundry and sitting on my butt on the couch after supper. Early bed and that is that.
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Tanya_Djamila: thank you for sharing the info on you back pain. Best of luck starting with your 1st surgery on the 29th. I hadn’t heard of “nerve burning” before. Most of my lower back pain is from arthritis. I hope for you that they are able to eliminate your back pain.
Illimae: Congrats on completing the 3 trial rads. Now it’s on to the pool! Your mini trip sounds fun. Also, glad your DH’s friend is still here. Can’t image who would hack an account and make such sad declaration.
Micmel— what a kind heart you have making all those masks and then sharing them. How thoughtful to donate to an infusion center. My radiation center had a box of donated knitted hats and scarves. I took one while under going 33 rad sessions back in 2017 as my hair was still mostly gone so the knitted hat felt warm and cozy. And still now, I wear that knitted hat. Wore it today, as a matter of fact. Air Conditioning blows cold on my head while sitting in my recliner but that knitted hat keeps me comfy. Those masks you donate could be used for years to come. So nice
Candy-678: very sorry for your loss. Life is precious and precarious, at the same time. I read your post on the Ibrance thread and will say a prayer for the decision you have to make
Mara51506: hope your scan results will be good news. I read your post about the trip to scans and back. You are a force of nature. I mean that in an endearing way. Oh, and I bought some Reece’s cups at Sam’s in your honor. Had 2 cups today Yum Yum
Bliss58: thanks for the info on the passes for disabled people for National Parks. I would love to travel this wonderful land and see the sites but not sure I could do it right now due to back pain. However, love the idea. In fact, on Roku I found GoTraveler on the Tubi channel that shows many episodes on the various National Park. I started watching that this afternoon as an alternative to physically making these trips.
BooBoo1- had a dream the other night where DH and I made it to Florida to visit the beaches. In my dream, I told DH we had to invite you to lunch so I could meet you. Can you tell I must be suffering from being locked down due to CoVid and am ready to travel?
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Candy~I’m sorry sweetheart about your church friend. It’s hard to understand the timing sometimes My mom was telling me today my distant uncle was climbing on a ladder to trim a limb , lost his balance smacked his head on the trunk and never regained consciousness again! I will gO to the ibrance thread to see what decision you need to Make. Oh and if You need the masks just let Me know What size jaw line and face you consider yourself that way I’ll know what size to send.
Tanya You also !!! Just let me know and I’ll get my Dh to Get the Packages out. Sent some out To family today. Hmm. My sweet Dh surprised with a beautiful desk and working space for my Sewing machine, it had cabinets storage and drawers for my Thread Containers and bobbins. And fabrics slots so I can see what I have on hand. I LOVE it. I was blown away with how thoughtful it was. He also surprised me with new living room furniture. Also. I’m thrilled. I have always wanted a desk and what better place than this ? Omg I’m In heaven What joy this machine has brought to Me. Dh is very kind and is always on the ball. He knows in my condition with my mets in my spine. I need a good firm Chair and workplace. I feel very thankful and blessed.Dodgers ~I adore my nurses. And try to share. I cannot wear 60 masks lol. It is our way of giving back. They will last a while for sure. Thank You for your kind thought.
Bliss~Hello there. Hope you’re well tonight.
Mara~Hi there my dear. Hope It wasn’t too hot like today here. GrossKBL~Welcom back. Grab a cool drink!
Mae~ Hello sweet friend. Hope you enjoyed your food!!
Moth~I’ve had those disappeared friends and or family. It baffles me why, but I bored it as they couldn’t handle it. So I tried to just move on and when I did talk It wasn’t a it cancer too much. Some People get weird. I’m sorry someone sucks
Chicagoan~ waving a hearty hello ! Stay cool!
Sondra~ hi ya! Hope today was a good one.
BooBoo~ Rosie~And Karen~ Always good
To see you in your chairs. Keeps Me company !!
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Dodgersgirl, DH couldn’t go anywhere, even if he wanted to. I know he gets the itch to travel but being a tour bus driver, he’s home bound until live concerts are back in every city. He’s also been so concerned about my eating troubles since surgery that he spent the last 5 months watching me like a hawk.
My gamma knife is on for Wednesday, so I’m treating myself to lobstah tomorrow!
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Illimae: in your pocket for Wednesday
Might also be in your pocket for lobstah tomorrow. Yum.
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Mara, in your pocket tomorrow and in yours Mae on Wednesday. Enjoy the lobstah tomorrow!
Tanya, so hoping you find relief from the back pain.
Candy, sad news about your church friend. Life can change so quickly and not just from cancer.
Mel, you are blessed girl to have such a thoughtful hubby! Mine can be at times, but then again....
I can't believe I slept 9 hrs last night! I think the Tylenol PM must've worked. Lol.
Goodnight to all.
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Tanya,
I didn’t know you suffered from back pain that was so bad. I’m so sorry you have to deal with that. I have never heard of nerve burning either, but I hope you find great relief from it. Please let me know if there is ANYTHING I can do for you. Where are you having your procedure?
So I had another wonderful discussion with my Onc (love her so much!), and she ordered a PET scan so we can see what’s going on with the bone mets. She is still not sure whether the cancer has spread to my lungs....because the Sarcoidosis and cancer look alike on the CT scan. But it doesn’t change our path forward even if it has. After my PET scan, we are either going to re-try Piqray (she is not a fan....said most of her patients who tried it could not tolerate the side effects) or she will try another drug. She asked if I would go back on Abraxane, and I said I’d rather not have to lose the little bit of hair that’s grown back. I’m not vain about baldness, but in the FL heat, I just can’t do wigs or headcovers. Too hot. She totally understood.
So PET scan is scheduled for next Tuesday, and then we’ll see how things look and go from there. I feel very blessed to have such an understanding and compassionate doctor.
Hope everyone has a good day!
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Yum! Plenty of leftovers for a snack tonight and 2 meals tomorrow.
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Mae,
Yummy! You enjoy the rest....you SO deserve it.
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absolutely! Yum yum. I want seafood now!
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booboo, it sounds to me like you are in great hands with your MO.
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Good afternoon all
Mae Lobster 🦞 looks delicious.
Mara the book swap is a nice idea.
I had some weird Se’s from faslodex last night it felt like a hot flash but I felt like I was blacking out, could barely walk. Kept calling out for Dh but he was asleep. I laid on living room floor and the coolness revived me. I don’t feel 100% but not like last night. Has anyone experienced anything like this?
Tany
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Hi all.
mara- Any news on scan yet?
Booboo- How did your appt go?
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Tanya, that sounds like fainting. I have low bp and am a fainter and I usually get hot before I faint . Have you fainted before? Do you have low bp? Low blood sugar? Are you well hydrated?
Hugs
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Boo- reread your post. Sorry, I got confused. So... PET Tuesday 7/28 and then choose next med.
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Tanya,
That does sound like fainting. I sometimes get a weird reaction from my I/F combo, but I attributed it more to Ibrance? I feel weak, as if I might pass out. Someone somewhere on these boards said to eat something salty, and that's what I do when I feel like that. I also have had to halve my BP meds or my BP tanks.
Feel better.
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Candy,
Yes ma'am. Correct. You (and several others) are so thoughtful to remember what everyone is doing. My poor pea brain will not allow me to remember ANYTHING! Anyway, thank you, my friend. Will let you know after my PET next Tuesday what my next treatment is going to be.
Tany, I'm getting worried about you. While the side effects of Faslodex include hot flashes, it doesn't include fainting. But...it is very easy to think that you could be dehydrated in this heat asMoth suggested. But I'd still tell your MO just in case it is the meds. Take care. I'm not that far away if you need me!
Bliss, thanks. I cannot tell you how much I love my MO. She is my third MO since I moved to FL over a year and a half ago. To anyone who is questioning either being treated poorly or dismissive by their MO, I strongly recommend moving on until you find one like mine. She listens to me and often changes her course of treatment based on my thoughts. I am so very blessed to have found this wonderful doctor.
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Just a quick update. I’m home from gamma knife radiation and all went well. I may be on the boards less for a few days, my phone completely crashed, i get nothing but the Apple reboot screen. Im sending this from my iPad until I get the phone fixed.
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Tanya~Please mention it and drink a lot of water. If you don't have a fever or any other symptoms, I'd say like ibrance maybe months side effects are different. Please don't forget to mention it to the MO. Better sae than sorry.
Mae~glad gamma went well, sorry about your phone I absolutely hate it when my phone isn't in my hand or I my pocket. Right to the iPad. Just like you. Hope it gets fixed soon.
A hello hello. To Bliss, Moth,Candy,BooBoo,Mara, dodgers, Bev Jen, nice to see everyone around. I've been a sewing queen and it's soothing. I've made almost 100 masks already. I'm giving. Them away to everyone and going to infusion nurses at my next appointment soon. I enjoy it so much. I need my sewing desk. My back isn't happy with the high chair I have to sit on and reach the peddle. Not going to work long term. Same with DH. Needed office furniture for his home office here with me. He officially will be with me until the end of January. Could be longer for sure. We're hoping more like he could stay and live here always. Get rid of the other place in Maryland. That would be sweet.
In pockets of who needs it. I'll bring fresh water melon ! Hugs to all sisters. Much love ~M~
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Boo, I agree. An MO you can really talk to and one who actually listens and cares is oh, so important. I feel that way about mine. I told her she cannot leave!
Mae, glad your Gamma Knife went well, but bummer about your phone!
Mel, good to hear your DH will be around til January, and hopefully longer. My DH is in the same kind of long-distance work arrangement hopefully for just one more year when he can retire with me!
Tanya, hope you get the fainting spell figured out. Hopefully, just a bit of dehydration.
Waving hi to all who are reading and wishing the best for everyone.
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Candy, I will let you know as soon as I know. It usually takes a week or two to get results. I know the longer it is, the more likely I am still NED. The MO would phone me to come in for an appt sooner if there is something showing. We are not as fast as you guys where I am.
Mel, I figured you were busy with the masks as you are not posting as much but you are doing wonderful with the masks. Good for you.
Tanya, that is definitely passing out. I have had that happen when I was overheated, when I fell while walking back in february, the shock caused me to pass out soon after i called my brother for help. I have had that happen in the bathroom as well when doctors were trying to increase my seizure meds. It is like you are in a tunnel and just cannot keep upright. Getting to the floor right away is the right thing to do. I would definitely mention this to MO and make sure you get some salt, check the BP, heart, lungs as well. Heat can be an issue as stated, make sure you are well hydrated. If you start feeling light headed, depending on where you are, move arms and legs at the same time if you can, move arms if you are standing as well. That can force more oxygen into you. This helped me when I would pass out on the toilet whether for number 1 or 2.
I had my chemo today. Still walking to and from the hospital. After I got home, made some lunch and then instead of sleeping as I usually do after chemo, decided to return the first book to the little library up the street and get a new one. The first one took less than a day to get through. Makes me think I want to go to goodwill and places like that to get some books to put in it. The selection left is not great, they could use more books I think. I would like more people to enjoy them as I did. I am also going to check out other free libraries and see what they have once I am done my audiobooks from my own library.
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Sandy~ lol I saw the nail polishes and meant to mention it, I know those colors 😉. That stuff works ! Hugs !
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Mae - wonderful news that the gamma knife radiation went well. Rest. Eat. You'll be in everyone's thoughts. But how annoying that your phone decided to have a hiccup.
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Wow ladies thanks
Moth you steered me in the right direction. I went to Dr office and had the mask on so drank no water. I also walked outside for 1/2 hour and sweated. And yes I do have low BP. I didn’t drink water at night bc bathroom all night.
Bliss thanks for the shout out. Drinking plenty today
mara thanks for arm and leg waving advice. I hope it never happens again though.
Mae I’m glad you’re done with gamma. Broken phones are terrible. I hope it’s an easy fix.
Booboo I’ll let Onc know tomorrow.
It rained here today so I went to market for a few things. On my way out a woman was walking toward Me in the parking lot, no 😷. It didn’t register until she turned around and ran back to her car and grabbed a mask. She passed me eyes smiling and said you made me remember. Also I haven’t seen any mask resister scenarios personally. I hope everyone just starts working together to get us on the right track.
Tanya
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BevJen thanks for responding I do get weak and flushed from the I/F but last night was way more intense.
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Tanya,
You are so welcome. I'm sorry that you are going through this, but it sounds like you might have identified the problem with your water intake yesterday. Hope things continue to improve.
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It’s odd what these drugs do to us. I had bloodwork done, port flush, and Xgeva shot yesterday, and on the bloodwork I was very surprised to see my sodium was low. What? All I eat seems to have salt in it, so I was very puzzled by that.
Anyone else experience bloodwork oddities?
Mae, I meant to say I’m glad for you the gamma knife radiation is over. Do you have to go again? Sorry, I am not familiar with that procedure. Hoping it’s all done!
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