My Husband, My Life, My Love, My Family, My Cancer
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Booboo- Hugs.
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Booboo, I hate to hear this but I’m glad you at peace with it. And I look forward to your continued input and friendship.
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Booboo you are an amazing woman! I do hope they look after you in the best possible way. Thank you for your thoughtfulness.
Mel - made me laugh and that’s not easy just now!
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Boo~my Boo. I’ve been trying to figure out the perfect thing to say and again after reading another one of your unselfish posts. Words escape me. You’re so strong to want to share with us like you do. Thank you. I hate this disease so very much. Words again escapes me. Because they would be bad bad words.
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Oh booboo, you are such an amazing sister to share your hospice experience with us. While this is a shitty disease, we learn so much from one another. Thank you for your openness. Praying for your days to be filled with peace
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booboo - I appreciate and admire your gentle candor. Thank you for sharing your feelings and experiences during a time we all wonder and worry about. I pray for continued strength, peace and comfort for you and your husband and sisters.
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I echo what the others have said, booboo, about your strength and kindness. I wish you peace and contentment and joy as you begin this new phase in your life.
One thing about hospice is that their mission is not just to help you die, it is to help live the best life you can for as long as possible. And it is possible to be here longer than you think, especially after stopping all harsh treatments.
My mother started hospice in November 2009, after being told there were no more options to treat her stage IV lung cancer. She expected to die within weeks. Eight months later she passed away, after having thanked her hospice nurse for making the experience so much fun.
My sister and I cared for her those last eight months. It was fun and sad and terrible and amazing. I wouldn't change that experience for the world.
Sending you gentle hugs, Laurie, and hoping you will be surrounded by love and comfort and care.
Trish
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Wow, today certainly is Friday the 13th. I started the day planning to walk on the treadmill to wake up. Certainly did wake me up as I was nearly thrown from it. Turned out the belt was not centered and probably loose too. It had been jerking when I started recently but was certainly not expecting to be thrown. Iit is also near my front door when folded down so I would have been launched into that. I did some crying from frustration, took some deep breaths and got the manual online. Found out where the allen key is kept on the treadmill and followed instructions to first align the belt to the middle and then decided to tighten a half turn to each side. Seems OK for now but will oil the belt when I get the lubricant from Amazon. Then while putting the Allen key back, went to stand up and whacked my head hard. Cried a couple of tears for that as well. I am pleased to have fixed it without my brother.
Edited to add, treated myself to lunch delivery and got some groceries from Walmart delivered. I may go for more walks outside if the storms don't show up but I have to wait until after The Young and the Restless. Still waiting for lubricant before attempting the treadmill again. Seems smooth for right now though.
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Mara~ I am glad you’re ok. You could have been really hurt. You’re one tough cookie. Sending you a great big hug. Also, way to go to fix youre own things.
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Booboo, I also echo what’s been said and am so appreciative for your kindness on this forum. I am sending a hug to you. I want to thank April for asking the great questions.
Mel, I’m so glad your toe is better.
Mara, I’m also so glad you didn’t get thrown. I’m sorry you’re having such a tough day.
I have a question for Moth or Curious if they come on. You two are so knowledgeable. I had a cortisone shot in each hip today for bursitis. Ouch. Anyway, when I was in a steroid pack, my ANC was 1.55, higher than my normal .9 or .8 when I am off. I’ve only had it once. Will the cortisone have the same reaction? I’m having blood drawn Monday, so I will find out. Also, do you know anything about it possibly affecting my tumor marker numbers? I have the 15-3 that’s been bumping up for four months. I’m thinking I should scratch what Monday’s shows because if it’s up, it might be because of the cortisone
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mara, ouch, hope your head doesn't get a big goose egg. I hate whacking my head. I did it a few times on cabinets when cleaning - ouch. It's such a horrible pain.
I had chemo yesterday, immunotherapy today. I'm so tired and out of it. It's very smoky and hot today 35C. Yesterday I needed a nap. Today I think I'll push through. I took one short walk with Olive - between the heat and the smoke it's awful outside. I popped into my mets zoom support group (not just breast ca, open to any stage 4) this morning too, but only for a bit as I had to leave early to go to immunotherapy. We talked a bit about the pressure as metastatic pts, esp those facing rapid disease, 'to make every day count/do something special/accomplish great things" and I said how unfair that is to us, to have this extra pressure.
We are enough, just as we are.
hugs everyone
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Hi, Moth. I had asked a question of you right above your post.
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oh KBL, sorry I missed it, thx for letting me know!
So steroids reduce inflammation by suppressing pro inflamatory genes. I think whether an injection of cortison can affect blood is tricky because I was just recently discussing geting steroid shots for my trigger thumb and my MO felt that an injection like that would not really have a systemic effect (this is critical for me as I have to go off immunotherapy if I need systemic - oral or IV - steroids like I did for pneumonitis this spring). She really thought that an injection would have minimal whole body effects.
Otoh, the amount they'd inject into a hip bursa would be a bit more significant but overall, I think the effect will not be like the oral steroids you took. If they were to affect your counts, your ANC would be a bit elevated and your 15-3 would likely be a bit suppressed (because inflammation increases tumor markers).
how often do you do labs? fwiw, I'd probably do the labs & if just ask repeat them in a couple weeks if you think the results are wonky
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Moth, you rock. So informative. Wow, that is great information about the tumor marker. I will know if it goes up, it’s most likely not from the shots, but I will take it with a grain of salt.
I get bloodwork monthly at my visit. I just keep an eye on everything as the months go by and take an average. I think doc will think the 5 to 10 point raise in markers for four months won’t mean anything.
Thank you, again. I really appreciate it.
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Moth my head is feeling better and the day improved once I repaired the belt on my treadmill. Just going to oil it tomorrow once the oil arrives from Amazon.
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Mel, that reminds me of a quote from the Dalai Lama a few years ago. "Be kind whenever possible. It's always possible."
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so much anger in the world. I’m trying to see others and be kind. The world is too artificial anymore.
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Thank you so much for your very kind words. You are all so precious to me. You have gotten me through this crazy disease—the knowledge shared here is not only excellent, but so valuable as we navigate MBC. Every single one of us has something valuable to share. One day it could be something that directly affects how you talk to your MO, or maybe it’s just something like Mel just shared to remind us about kindness.
I have tried to understand from the beginning of this journey what the “end” looks like. I’m a planner and control freak, so I am one who will keep pushing until I get answers. Unfortunately, there is no magic play-by-play for what the end looks like because it is most likely going to be different for each of us. However, I thought it might be helpful and maybe even give someone a bit of peace knowing what is available to us as we journey to the end.
I will send under another post some of the things I learned. There were some surprises, so stay tuned.
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booboo, thank you for sharing more with us. I've been thinking about you and wondering how you are and how you are dealing with this process. I thankful that you have hospice, but am so sorry that you are at that point.
(((hugs)))
Carol
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Laurie, I am happy to hear from you, will be looking forward to your further posts about what you learn as well.
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Well, did my burger joint walk today. Sunny day, not humid so quite comfortable for a long walk. 9km/5.6 miles roundtrip. Had my lunch there as well. I literally walked off breakfast from before I left and then lunch after finishing at Harveys. 14546 steps in total. Soon be moving to wanting 16 to 18 thousand steps in a given day. It just makes me feel good after the walk but I willl admit, I did procrastinate a lot today as I was going to go earlier today but at least got it done.
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BooBoo~ thinking of you daily. Sending Love and hugs.
Mara~ I wish I could walk like you. I honestly do.
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Thanks Mel. I don't walk superfast but keep steady.
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booboo, I’m a big planner too and really appreciate knowing anything I can learn to make the end easier for everyone, thank you.
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Home after our short eight day vacation to Sweden to visit friends and family and do a little shopping. It was like going back to 2019 - I didn't wear a mask anywhere except the airport and on the airplane, there aren't signs all over the place telling you where to stand, and for most people Covid was more or less over at the start of the summer (although Delta is starting to pick up). It took a few days to relax, but it was so nice to browse in stores and eat IN a restaurant like a normal person. On our flight to Stockholm there was a group of Chinese students picking up a connecting Air China flight to Beijing and several of them actually had on the whole white hazmat suit thing, face mask, medical mask, and the hoodie pulled over their hair.
The testing requirements weren't too bad either with the video supervised lateral flow tests. However, our Day 2 PCR tests arrived with yesterday's mailman, about 2 hours before we got home so now one of us has to go down to the delivery office to pick them up on Monday which may or may not be within the 2 day window. *shrug* Its all a farce anyway since the government isn't actually sequencing most of these tests and the double jabbed dont have to quarantine from Monday anyway.
Resting my feet for the next few days as we walked MILES - in the city, along the lake, on forest trails (even did a few running strides). For what I carried in terms of luggage and hoisting it in and out of trains and cars I had no problems, so I was really happy about that as the weight and distribution is similar to a long-distance skating pack and I would like to do that once again this coming winter. To know my back was good and strong was a relief.
We now have four weeks until we head to the US in mid-September, but knowing the travel ropes and what to expect makes that part a lot easier.
Chicagoan - you'll be pleased to know that pickleball (or rather, "paddle") is THE hot new thing in Sweden. We watched some folks play it on a floating court in the Stockholm harbor and there are multiple indoor arenas even in OH's hick town.
Boo - on a more serious note, Id like to add my appreciation for your willingness to document "the end".
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I am still reading all your posts.
Still tough here. Going to the Nursing Home to be with my sister each day. My PET is Wednesday and then I will need to decide on next step-- Y90 on the liver or just change systemic treatment.
I am exhausted-- mentally and physically.
Keep me in your prayers.
Hugs to you all.
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Sondra-Sounds like you had a great vacation! Glad to know that pickleball is thriving in Sweden. I encourage any of my MBC sisters who are relatively agile to try it. In my roving PB tribes, there are at least two men who have cancer and are undergoing active treatment. It's a doable sport for some cancer patients and so much fun.
Candy-Remember the Sabbath and keep it holy. Rest today, even as you spend time with your sister. Is she conscious and aware of what's going on? How are her spirits? God's peace to you both.
Laurie-I hope you are feeling at peace and am grateful for your willingness to share what you are learning as we each prepare for our deaths, whenever they might be.
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huggin you Candy. You’re in my thoughts.
Waving to Sondra and Mae. And Chicagoan. Hope your Sunday is good.
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Booboo, Thinking of you and also appreciative of your sharing your experience with us. We’re here for you, always.
Candy, in your pocket for your PET but also as you support your sister and see to your own health. I hope you’re able to eat and sleep enough even with the added things on your mind, and that you feel some support from your church family too. I’m with you in spirit, my friend
Sondra, It sounds like your vacation was much needed and well enjoyed. I’ve never been to Sweden but I’d sure like to! My parents came over from Germany and I’ve been there and some surrounding countries in the last few years on a river cruise. It did feel good to forget about Covid for a while but I’m leary about the Delta variant putting us back there again. Ugh.
Mara, Wow, you’re getting a ton of steps in! Walking for a purpose makes a lot more sense than my walking around a neighborhood just to walk. Lunch is a good way to break it up too. I hope your treadmill is back in order again.
Mel, you are right on with the kindness post. Just yesterday in Walmart there was a slow moving older lady pushing her cart past us and DH heard her mumble, “chemo is hell”. So much that people are dealing with that we never know. Thx for the reminder.
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