My Husband, My Life, My Love, My Family, My Cancer

Sunshine99

Just stopping by the living room to say "hi" to everyone. Candy, I always felt a little guilty (my problem, I know) when you posted everyone's upcoming scans, etc. I even started an Excel spreadsheet to do the same. Lasted a couple of days. I don't think any of us expect it, so just take care of YOU right now!

I feel bad when I don't mention each post individually but know that I do read them and my heart hurts for those who are hurting.

emac, I do have a question for you: Is cortisol part of the regular bloodwork? I routinely get a CBC, CMP, CEA and CA 27.29. I've never noticed a cortisol number in there, but I'd be curious as to what mine is.

Carol

Chicagoan

Mara,

I agree with you about walkers. When I had to use one for a while, it was so exhausting and awkward. They need to design something better. But at least I was able to get up and move around. I like those Bob and Brad videos too.

booboo1

Hi All. Checking in to say hi…I’ve been lurking a bit myself. I think I may have stumped my doctor and Palliative Care nurse. The pain I’ve been experiencing is unbelievable. They keep throwing higher and higher amounts of opioids at me, but it’s not working. I am waiting to see the nurse practitioner, as she is the pain med expert on my team. Wait, wait, wait some more…it’s crazy. My nurse feels so bad. She is a cancer survivor, so she has a LOT of empathy. I could not ask for a better team. Anyway, the nurse practitioner is apparently on multiple teams and is not able to get to me until October 7th, so nothing can change until she sees me. I guess there is a shortage of staff everywhere. My nurse is trying to get a Fentanyl patch to see if that will help. I’m not sure it will, but I’m willing to try anything at this point.

Have any of you had a Fentanyl patch? Just wondering if it worked for pain?

Candy, my deepest, belated condolences on the passing of your Father.

Mae, hope your knee is improving every day.

Tanya, I wish you safe travels. What a good friend you are to hop on a plane to be with your friend. Bless you, my friend.

Mel, I am right there along side of the rest of the Living room gang who is hoping that your sister will be ok.

Love to all.

mara51506

Oh Laurie, I am so sorry about all the pain you are going through. I am in your pocket sending healing vibrations to the aid in pain relief. I hope relief comes soon.

booboo1

Mara, you are so sweet. Thank you for being so kind. I am hanging in there. I can’t go too far because walking has become an issue. My nurse is worried that I will fracture something, so I just have to be very careful. I am not the first cancer patient with this issue (deep bone pain). I think for some people it’s hard to find the right combo of drugs to get relief, but I believe it’s just a matter of time before they do

Sunshine99

I've been tracking my Ibrance delivery all day. It was "out for delivery." Suddenly, due to disruptions in the Ukraine, it's delayed until Monday. WHAT?????

Called UPS, talked to a guy in India, told him it was my chemo drug and I needed it NOW. Actually, I don't start it again until Saturday, but we're leaving tomorrow, and I need to have it before we leave.

Got another call from someone local who said it had been put on the wrong truck, but that they would deliver it tonight. It probably would not have been a crisis if I didn't get it until Monday, since my ANC is low, but still...

Sheesh. The last time I had it shipped to my local CVS, they couldn't find it, despite the fact that they had emailed me to tell me it was there. I thought having it shipped to my house would solve that problem. One time UPS left it sitting in the hot sun on my porch without ringing the doorbell. I guess they didn't read the "SIGNATURE REQUIRED" part.

I need a drink - except I'm not drinking right now. Oh well. I'm watching my front porch security camera on my phone and have the front windows open so that I can hear the UPS truck.

emac877

Sunshine99- I typically get a CBC and CMP monthly and a quarterly CA 27-29. My PCP ordered the cortisol and a check of my thyroid and cardiac labs because my weight has been fluctuating and I have the ongoing dizziness and increased fatigue so she started there. She just wanted to start with those to rule out anything going on with my heart or thyroid and the cortisol would typically be adrenal or pituitary function but I don't know that I have ever had trouble with those. It will be interesting to see what my MO thinks this coming week.

mara51506

Candy and everyone thank you for being here for each other and me. Candy, you are meticulous about following scans with everything you have been dealing with and that is so kind of you to do.

Tanya, I hope your friend is doing better.

Mel, I know you will update unless I have missed it about your sister. I am glad you can be with her to try and get stuff straightened out.

I did more walking today than in a long time. I did do an initial half hour walk to the grocery store this morning and 10 min walk back from the bus stop but then older DB and SIL asked if I wanted to shop so I said sure, walking around Costco and a grocery store gave me 15000 steps for the day, not bad at all. May have to include some mall walking alongside the balance exercises I found on youtube. I also got a lot of small treats at costco and picked up some cottage cheese at the grocery store as well for the protein power.

Micmel

BooBoo~I don't like hearing that you're in pain. Bone pain is seriously tough. I havehad fentanyl patches and they are strong. Be careful with them. I used 50 mg but they have higher mg ones as well. Knocked me out for sure. But it does help with pain for sure. Just take it slow and figure out your doseage. I'm sending you hugs and love.

My sister had another blood transfusion and she's trying to maintain her blood counts in order to be able to handle treatment. So basically no treatment yet only one. She said to me the fatigue was off the charts. I feel awful for her. She wants me to come down when I can bring the head caps for her when she's losing her hair. She will need them. So I think as long as she remains home. I'll be going next week. Her kids are misfits they just aren't thoughtful or kind or caring. It's really a shame because they are sucking her dry. One good thing. Her go fund me page is up to 9k. Amazing how good people can be that aren't your family. So that is a need for her. Thank goodness. She really needs the help.

Sunshine99

emac, thank you. I hope they can figure out what's going on with you.

mel, I'm glad you know at least a more about what's going on with your sister - even if it's hard news.

mara, that's a lot of steps - nice job!

GoldensRBest

Laurie - I sure hope they find something to help with the pain. That is one of my worst fears - at least you have a great team. Prayers for relief🙏🏻🙏🏻🙏🏻

Mel - you are a sweet blessing to your sister. It must be so hard to watch…..

Mara - awesome walking! So envious….fingers crossed that I can walk after my knee replacement next month. Between knee pain and my damn back I can hardly walk.

Candy - have been thinking of you often. I pray you have found some peaceful moments to help you through your days 🙏🏻🙏🏻

To all my other sisters here - you are simply the best people on earth❤️❤️❤️❤️❤️

illimae

Good morning friends, The steroids have worn off and my knee is a bit sore but usable, I still have myself on chill mode for now. A good friend of DH (and me) drove out yesterday and he’s staying in our travel trailer until Monday when he heads back to Houston. It’s been several months and is very nice to see the boys back together.

LivingIVlife

Thinking of Emac, Booboo, Mel, Candy and all who are struggling with mental and physical pain. Unfortunately too many to mention.

I have been struggling with fatigue and back and hip pain. My blood count results on Tuesday were the lowest they have ever been. Again I have to stop the Ibrance until the counts come up. I think I may have a chest infection and urinary infection but I have to wait to see my GP for that and he is gone until next week. The NP is also away. There is no way I am heading to the emergency room! Right now I am resting in bed and feel like sh.. My husband goes around the house upset because his computer isn't working right or he didn't get the days off he wanted etc. etc. Not once has he asked about me. All I know is you don't have to live alone to feel you are alone. I feel alone almost all the time. Geezus!

mara51506

Mel, Laurie, Candy and Emac, adding in Living and anyone else, sending all my love to you all who need it for physical, emotional and other stressors, in all of your pockets.

After a nice night of shopping and walking with my older brother and SIL, got home, fell asleep not realizing it and wound up staying up til 5am, slept a few hours but taking the day off due to fatigue except for my outer and inner thigh exercises for balance. Feels good. Bought a lot of chocolate at Costco, a pantry size peanut M&Ms and Halloween type candy. Plan is to eat 100 cals worth with a meal instead of so much peanut butter. I am going to try to keep meals at 300 to no more than 500 cals depending on activity. Should be easy to accomplish by shrinking all the normal food.

My breakfast was weird to me but really filling. I have decided to oust salad dressing and mayo as the major calorie and fat givers at meals. I am replacing with sour cream, keeping queso and I picked up cottage cheese which has 15 g of protein per 1/2 cup as toppings and binders. Breakfast today was 1/2 cup cottage cheese on top 3/4 cup beefless ground, added sprinkle of wheat bran as well. Seasoned with a mild steak seasoning and salt, mixed together and it was good. Had 8 of the M&Ms too. Calorie count for meal including the M&Ms was 300 calories but with 33 grams of protein, I am totally stuffed in a good way. Eggs and beans will likely be the next meal. I am also looking into things like pancakes made with cottage cheese vs milk, egg bites with cottage cheese if I buy some shredded cheese, would have to get a dollar store muffin pan but that appeals to me too. Many options to consider

denny10

livinglife, you are not alone. You have your 'sisters' in micmels sitting room whenever you need us. Sorry we cannot rush over and get you something to eat and drink, so you can relax in bed until you can get to see a doctor about your possible infections and pain. Rest, lots of liquids and as many posts here as you need to offload.

mara51506

Living, I missed the part in your post about feeling alone and that is so hard to deal with coming from someone who does live alone. My other feeling is that although you should not have to do this, tell your husband how you are feeling, feeling this way without telling him keeps those feelings to you. If you have told your husband and nothing happens, ask for a therapist or social worker who can suggest things that help you medically and emotionally. You need yourself. As far as the possible UTI, if your GP is away, is it not possible to go to a walk in clinic and be tested right there and get a prescription. Sounds like you need a visit sooner.

Elderberry

I am doing my best. This thread moves so fast.

micemel: I am sorry about your sister. It makes my heart feel good that there are folks who care enough to contribute to GoFundMe. I hope it helps her to know some folks want to help and that it might relieve just a little stress.

** There was a study done about crying. There are different chemicals in the tears produced by crying or produced from peeling an onions. One releases stress hormones, the other only serves the purpose of cleansing the eyeball. Truth in "Have a good cry, it will make you feel better"

Goldens: I am sorry about the loss of your friend and best man. Dying from an infection. So wrong. So sad.

sunshine: I hope your pain improves or you get appropriate relief. What a misery.

tanya: I was horrified to hear about what your sister's sinus infection did to her body. How did she get a fungal infection there? I hope you have a safe travel and can give her comfort and support

mae: glad to hear your knee is still improving and that you are having a good visit with a friend. I have not had any overnight visits since Dec 2019. My friend in Seattle is coming up at the end of October, I may have to go into training and not toddle off to lie on the bed at nine before I actually get ready to go to bed an 1 1/2 hrs later

kikomoon: I totally get scanxiety. I had a good feeling about this last PET but I still got myself wound up. Breathe - is all I can offer and you being in my thoughts along with all the other ladies waiting for scans or results.

seeq: did you find a nice pair of glasses? I am overdue for my eye check. I had PSK about 10 years ago and 20/20 except for reading small print. I can still see way ahead but the edges of certain letters (like the scrolling banner on news stations) are getting a bit fuzzy.

emac: You had a scan? Done? Results.

candy: please take care of yourself. You are dealing with your father's death and the mess of settling affairs.

booboo: I am sorry to see posting about more pain and hope that something can be done to make it more manageable.

sunshine: Ukraine?!! WTF? Are your meds being shipped through Russian lines in the Black Sea?

LivingIvLife: Your DH needs his butt kicked. I get mad at people who whine about having to park a bit further away then they would like. I think of all you ladies and say under my breath--- just be grateful you can walk - and have pain free walking. Jerks.

mara: I walk a fair bit and can walk long distances but I need to do more for just muscle strength. I have been toying at the idea of barre exercises but would that be a bit much for an Old Bird like me? The studio is only a few blocks from where I live. I guess I could try out at least one class. I won't expect much from just one, other than wobbly legs and sore thighs, but it might give me an idea if I am able to do it - even modified, or just being dumb thinking I could do it all

I hope I didn't miss too many of you

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mara51506

Elderberry, I've heard of but never actually attempted bar. Given my limited budget, I would check it out on youtube and try to mimic it. As far as leg strength, mostly focusing on sidekicks while holding the counter to work those muscles and figure out another one for inner thighs as well to help balance, walking is easy for me but balance and strength are also an issue, more protein as well to build extra muscle, really into the cottage cheese being low cal and so high in protein. Can't wait to try making pancakes with cottage cheese subbing for milk, we will see how it works out.

Micmel

Waving to elderberry. Hugs to you!

BooBoo~ thank you from the bottom Of my heart. I’m sending you online love. So thoughtful and kind to do that for my sister. Thanks for asking

SeeQ

emac - yay for the good brain MRI - I'm sure that's a relief. In your pocket for next week's scans.

Booboo - I'm sorry you're in so much pain. At first I thought you were saying they wouldn't be able to help you more until October - we were going to have to kick some butt. I hope the fentanyl patch works for you.

Sunshine - grrr for the shipping foul up on the meds. That is so frustrating! I'm glad they tracked it down for you.

Mel - I hope your sister improves enough to get treatment. Glad you got to see her, and that her gofundme account is growing.

Mae - how nice that hubby's friend cans for a visit. A happy change from the routine is good.

LivingIVLife- I'm sorry your hurting physically and emotionally. That feeling alone when you're not alone just sucks.

Elderberry- I did find a nice pair of glasses. I didn't get the rimless that I usually like (because I didn't want to pay an extra $150), but they had petite sized frames that fit my face better. And for some reason, my copay was waived. It's not much of a copay, but it was still was a pleasant surprise. And as for you - Barre?! You go girl!

Mara - you always impress me with how you are continually trying to improve yourself, your diet, your space, or your situation.

Tonight, we went out to great dinner and to a rodeo in a nearby town. Tomorrow, is a BBQ cook-off in our new hometown, so that should be fun.

Waving to everyone in the Living Room. Have a great weekend!

candy-678

So I don't want to sound whiny. But I am truly trying to understand. I am reading your posts, and I am glad to hear from all of you, and I read the last post above (seeQ). And about her going to dinner and a rodeo and going to a BBBQ cookoff today. Let me say, I don't fault anyone for having fun. If you have the chance, go for it. Enjoy life.

But last night I was sitting watching the local news after my supper of a tuna sandwich. My stomach was rolling. A tuna sandwich made me feel sick. I was sitting there so tired I wanted to go to bed--- at 5pm!!! I held out till 8pm then fell into bed and was asleep instantly. This happens all the time. Nausea. Fatigue. On the news they were talking about Fall festivals in our area for this weekend--- an Octoberfest, an apple festival, etc. I would like to go to those, but with the nausea/GI issues (running to bathroom unexpectedly too) and the tiredness I cannot enjoy anything anymore.

What can I do?? The little devil on my shoulder told me last night "just stop the meds, you will feel better and can enjoy things again". But I know that stopping treatment will result in my death. And with losing my sister last year and my Dad recently I don't want to hasten my death and do that to my remaining family. I just wish I could enjoy life again. And not feel bad all the time.

mara51506

Candy, is it possible to ask the doctor if there is the option of a dose reduction or treatment break perhaps to get your body starting from a stronger physical position. I understand that with Stage IV, there is the need of medication and a need to balance that with quality of life too. Being sick and nauseated will not help you function or feel any energy. With all that you have been dealing with recently, I do think you should keep listening to your body about sleep. A dose reduction or treatment break, not stoppage could be what will help your body get more back on track. Eating difficulties could be helped with small meals with a digestive enzyme before each meal, not a probiotic and possibly you need to ask about getting some antinausea meds that you could even cut with a pill cutter so as not to cause drowsiness. Please check with your doctor about about a dose reduction or break or if there is a different time of day that you could take your med if it is in pill form like before bed. In your pocket anyway.

In my end of things, I have been unable to sleep right since Thursday, maybe 2 or 3 hours. Decided I need to have all chores completed by 7pm and stop engaging on the computer or TV by no later than 9pm. Just start getting into bed by 10 as a habit. Going to bed at 4 or 5 am does not work.

Taking it easy today, Going to use a blender and mix 1/2 cup cottage cheese, 1 egg, 1/4 beans. I will also put the wheat bran in too along with the queso and sour cream. Will add seasoning and then heat in a frying pan, not sure how it will come out but I want the protein. I am sure it won't look nice but I don't care. May just march in the house for steps today, not feeling like going out. Next week may involve some mall walking of some sort, balance exercises etc. Got some wash soda baking up, refilled my laundry container with mostly oxyclean and wash soda with a bit of tide, should last a long while.

Enough of my verbal diarrhea on the page so to speak, sending support to those who need it and in everyone's pocket all the time even with my verbose posts.

DodgersGirl

Candy— I am right there with you. I love reading all the wonderful things the MBC people here share. I can’t do those things. My GI issues keep me close to restrooms as I never know when an episode is going to occur. My current meds also make my colon gurgle loud enough I think everyone within 15’ could hear. TMI (sorry) but there are days I have diarrhea 6-8 times. I do have prescription strength lomotil. Just don’t feel like it is safe to try to make non-medically necessary trips.

I hope your QOL improves.

I just started my latest treatment so I need to see if it’s working before asking for a dose red

mara51506

Dodgersgirl, in your pocket for the new treatment and am sorry you are dealing with the diarrhea, went through the GI stuff a long while myself before I cleared it up but being chained to a bathroom is miserable, no advice, just my support.

Anonymous

Mara and Elderberry - I know ive said it before, but have a peek at Senior Shape Fitness on Youtube. Her barre and pilates routines are AWESOME and Ive been using them for a long time to increase balance and leg/arm/back/core strength. Id recommend starting with the 10 minute workouts just to get the hang of it. The longer beginner barre workouts are absolute ass kickers but you see results pretty quick. Be mindful of turnouts and knees and always modify if you need to.

Boo - I hope they can get your pain sorted soon, whatever cocktail is needed. Pain is just the worst, but it must be so scary to have stumped doctors and no way to get it moderately under control. Hang in there!

Candy - you've been struggling for some time with fatigue and gastro issues. If it meant moving off lynparza to a different drug that may not have such an impact on your life, would you consider that? Would your MO be open to that discussion? I know we try to run each treatment to its limit, but some just aren't going to jive to give quality of life.

Scanned on Thursday and not sure if I am fatigued or experiencing scanxiety today. Chest feels a bit tight and im a little lightheaded. I dont know if I should go clean the house or take a nap. Monday with MO and thankfully clinic is running, though hospital is within the funeral security cordons and streets will be shut down with heavy police presence. What a zoo.

DodgersGirl

Mara— thanks. I appreciate the support. I take spare clothes with me when I do venture out, just in case there’s an “accident

candy-678

Thank you ladies for listening to me and offering advice. Really I have felt crummy since the start of all this cancer crap. I was on Ibrance at first, and that made me tired. The Letrozole made me stiff. But this Lynparza is worse, I think. The nausea, GI issues, and tiredness is worse.

I have thought about asking my MO for a dose reduction. I started at the highest dose last Sept (2021) and we lowered the dose by 100mg 3 months later. So I have been at the step below the highest for 1 year. My scans look good. Maybe down another 100mg?? I don't know. Will it help? Will it hurt the scans? I take Lynparza twice a day, morning and evening, so no changing the time of day for taking it.

I have asked about anti-nausea meds. Prescribed Zofran. I have it at home, but hesitate taking it due to it makes me sleepy and constipated (so it would be going the other way with my bowels, good grief).

I do hate to move to the next line therapy. I don't even know what that would be. My MO has not discussed next line with me, since my scans are good for now. And, at least, I know what to expect with the current meds. Starting a new one with who knows what side effects seems daunting. And we all know each treatment has its own set of side effects. Next I could have hand and foot syndrome, or neuropathy where I cannot walk.

Dodgers- I am sorry you are struggling too. But, misery loves company. At least I don't feel alone in this. Sorry. What treatment is making your GI system a mess? I cannot remember what you are currently on.

DodgersGirl

Candy- I am on Capecitabine (Xeloda). I take it twice a day, like your tx.

I, too, have Zofran for nausea but in the last 4 cycles have taken it for a total of 3 times. Don’t want to be constipated.

For diarrhea, I take prescription Lomotil, Imodium AD, and/or Pepto Bismol

I need to lean on those more, taking them more regularly.... I just don’t like taking pills.

I had scans last week and that process agitated my back and hip mets so in a bit of pain this weekend.

Sig

emac877

Candy678- I would definitely talk to your doc. I see mine at the end of next week and am going to ask about a dose reduction. If you did well with one and remained stable maybe that's an option without switching treatment. I get the argument though. The idea of a dose reduction scares me because I'm stable right now but I think I need to. I felt a lot better when I was off treatment for radiation therapy. I'm on Verzenio/Faslodex and while I don't get the GI stuff from those I do have unbearable fatigue at times and you're right, it doesn't feel good to be out when we are exhausted. I've been on that same fence between not wanting to burn through lines of treatment and at the same debating quality of life. I really don't want to live like this but at the same time I am committed to outliving my folks so it's a hard call and I don't have answers. I just hate to think of you sitting alone in your house so much. Zofran didn't really work for me but I do carry pepto bismol tabs with me and peppermints that will help without causing a lot of constipation and fatigue. I also carry bentyl, lomotil and immodium tabs. I have a little 7 slot pill pack I got at the vitamin shoppe.

mara51506

Dodgersgirl, after I was on steroids and my digestive system was all but destroyed and having the loose bowels, I took to taking them the night before and after meals before anything could start. It helped for going out but was awful to get my system back in order. Hope it settles for you soon.

Candy, when it comes to Zofran which I still have, I did not like the drowsiness but was given clearance that if I was not sure I wanted a full dose, I was fine to take a pill cutter and cut the dose by half. Still works for nausea but does not knock you on your butt like the regular dose could.

I also had another property issue going on at my house today, This just must stop.

Ava the tuxedo thinks that she is the landlord of my lap and was trying to evict poor Tigger. Like the brave cat he is, he stood his ground and we had a standoff on my lap while they both fell asleep finally.