My Husband, My Life, My Love, My Family, My Cancer
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LivingIVlife, it’s about a 10 hour drive from Houston to the cabin, we enjoy the road trip but it can wear on us sometimes.
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Katyblu - I hope you find the strength to make it as long as you want or need.
illimae - Wow, that's a long drive. Hopefully you don't have to make it often.
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Your description of leaky pants, soggy bottom, is exactly how I am feeling. I'm not glad you are having this issue but I am glad to know I'm not alone.
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Kitty~ I am sorry about your car. Shit stinks..I’m glad it was only a minor thing and you weren’t hurt.
My son is not overly excited about moving out , which warms my heart. I’m mama bear sickness 🐻, I will miss him. Even though it’s literally right down the road. Which I’m secretly thrilled about. I know I’ll be seeing him. I love my Kids so much it makes my heart hurt. I at least know they both have launched on their own. Although my daughter does not have a perfect marriage. But who does. ? They have to work on it. Or I’ll have a staycactioner. Being a parent is hard.
Mara~ you’re a tough cookie I admire your perseverance!
Mae~ in your pocket for scans. When needed.
BooBoo ~I’m sorry you didn’t have as good a time at Disney as you may have liked. I think since I e never been there I wouldn’t know but you’d like to think it would’ve have a happy one!! Good for you for going!
ILowen~ hope you enjoyed your haircut. Sometimes it just feels good. Clean and sharp! Good for you!
Kris~ I think that is why my son was looking in the area. He didn’t want to be far from me. I’m so glad , it’s almost on the same road!! I’m thankful. Having your daughter home is nice. I wouldn’t mind having mine. Secretly of course.
Living~ I am Almost done as well. A few more things to finish. But nothing major.
Goldens~ I hope the show I’m watching is a good one lol
Go kale ~I laughed at your cbd oil story I love laughing with my daughter. It makes me happy.
Love to Tanya ! Hugs to all
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Mae- that is a long road trip especially if you find yourself going back and forth. I have done it going to Ontario but now I could probably do 6 or 7 hours at the most.
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Well I’m having a problem and so sorry if it’s TMI. If it is, look away! I just want to whine but am also looking for suggestions. Every three weeks I get the big D at the end of my Xeloda cycle. Then I have to take Immodium. Then I have the opposite problem. Then I have a hemorrhoid that gets aggravated to all hell and is the worst pain in the rear literally when I finally go a bit. It’s become a vicious cycle. My MO’s plan was to try less Immodium, but that didn’t work. And to prescribe a suppository that was $200!! So that didn’t work because I refuse to pay that. Isn’t it just like an enema? Those are $11 OTC.
So I took colace, and now I’m back to the big D literally every 60 to 90 minutes. It may have stopped for the night because there is probably nothing left in there. I’ve been drinking so much water, maybe too much? I just feel bleh and so does my rear end. I don’t see MO for another 3 weeks. I will probably message her but unsure what she would do. I thought I eat fairly healthy but couldpay more attention to diet. I try to drink a hulking green smoothie everyday and have a veg at dinner, but I know I’ve been slacking a little. Why was the suppository $200? Seems like a lot of money for something going where that’s headed.
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Kikomoon- I am sorry I don't have much advise to give you. My treatments give me constipation, so opposite of your situation. I read that Immodium is the go-to drug for the diarrhea issues associated with our meds. I think you should try to message your MO and see what else they can try. Yeah, $200 is quite steep for a one-time suppository (one dose only is how I am reading your post). But you do need something to stop the diarrhea, not just for your comfort, but diarrhea can mess with your electrolytes.
Do you guys ever wonder what would happen if we just stopped our meds? Yesterday I did my 30-minute exercise routine and afterward I felt sooo tired. I used to work a 12-hour shift at my job. Now, I don't have the stamina for even 30 minutes of activity. My last CT showed shrinkage of the liver mets, and the bone mets are quiet per the PET. So, it is not like the cancer is wreaking havoc right now. So is it the meds that makes me feel this way? And what if I would stop them? Would I feel like the old me until the cancer grows? And how long would that be?
I think Booboo said that she felt better when stopping the meds. I don't want to die. I don't want my death hurried along. But I hate feeling like I do. I totally understood Katyblu's post about breaking down in the gym. I never was a "gym" person. I am more a reading, less active person. But I want the STAMINA back. Just to be able to do things again without feeling like a deflated balloon.
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Candy, I can feel you on the fatigue. Really been exhausted myself and it is hard to get myself to want to walk or do anything myself. I have felt this way since long before the recent fall and housing stress. Yes, I do believe being of the drugs would probably make us feel better, whether we are ready for that is another story.
Katyblu, I am sorry you had a breakdown at your gym, I think you are a hero belonging to a gym. I hope you feel emotionally better today.
As for me, I woke up this morning after a dream about not getting along with my coworkers and then I was hearing someone in the office slamming drawers. Turned out it was just the workers nailing and pounding in the apartment below me. Geez.
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Kikomoon, I started the same drug "cocktail" (xeloda, tukysa, herceptin) on Dec. 6, and I'm having similar diarrhea issues, plus sores on my lips and gums. The suppository may be to help with the hemmorhoids. You might try Preparation H suppositories. They've helped me in the past. I'm going to try them again.
This is my week off Xeloda and I'm hoping I feel better by Christmas day. My DD, SIL, and grandkids are coming over for Christmas dinner and opening gifts and I'd like to enjoy the food, merriment and even the mess.
Hope you feel better soon.
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Candy - I am sure the drugs cause the fatigue. I think about taking a nap these days, but there really isn’t time. If I weren’t working, I could see taking a 20 minute nap after lunch to see if I had more energy in the late afternoon. My healthy sister in law takes a daily nap and she is in her late 50’s.
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Kikomoon - I wished I had a solution for you, but like Candy my SEs go to the opposite. Although I will say that over the last cycle while I've had constipation when I can go it has been an immediate need. So like the big D but with a constipation spin. I also suffer from hemorrhoids which absolutely suck. I may try those preparation H suppositories although that sounds gross. Just for a funny aside, when you said you get the big D every three weeks coupled with you TMI warning I thought you were referring to sex! I guess my mind is just in the gutter haha!
Candy - I completely feel you on stamina. I have sooo much less now. Everything makes me tired. But I was able to pull myself together and go back yesterday for a 45 minute lifting class. The lifting classes are low impact with no cardio and I can modify or use smaller weights. So it was much nicer. I'm going to follow Runor's advice and take everything slowly and make small incremental gains and celebrate those. My DH told me I need to readjust my expectations, which I understand but it's just hard.
Mara - I'm always awed that you are out there walking all the time. I can't remember the last time I walked to a store. Though I haven't lived in a walkable area in a while. I hope you're feeling better and healing!
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kikomoon, I'm sorry you're dealing with this shit (lol, sorry). I've been on the same combo for over a year and had that problem at first too. What worked for me was an Imodium daily for a couple days, then none to see if D came back but no more than 2 days to prevent constipation problems. When I got it controlled with Imodium, I took it every other day a few times and soon didn't need it at all. I'd also avoid the green smoothie until you have more stable bowel movements. Veggies are great but not when you've got big D.
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Kiko, I'm so sorry. I'd balk at paying $200, too! I'd definitely call or message your MO. I've not been "regular" forever, it seems. I've tend toward the big C, so Milk of Magnesia is my go-to. I've tried the Calm drink, but I hate how it tastes. I've used Imodium for the D, sometimes Pepto (our joke is to call it Pepto Dismal). It's never ending, right? I hope today is better.
Speaking of dreams, I woke up early to say goodbye to our niece who has been visiting (she wore a mask the entire time she was inside with us). I went back to bed and had some weird dreams. I dreamed that there was this little monkey who was annoying me and I was trying to push him (?) away and then tie him up. Then I thought, "Oh I should be nice to the monkey because I'm so much bigger than he is. What if a big gorilla came along and treated me like that?" Weird. Woke up again, tired... I'm thinking of going back to bed. Waiting for the coffee to kick in. It usually gets things moving in the C department.
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I tend to also be a on C side as well. Somedays it’s like an Olympic sport. Tough stuff . It’s awful. I’m so sorry about the big D that’s certainly no picnic in any way.. feel better.
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It sounds like a lot of people are using immodium in pill form. I, too, get the big D with xeloda (and then my other drug, neratinib, can sometimes do that or alternatively constipate me.) I don't know if it will help anyone, but I've started using liquid immodium -- generic name loperamide -- and that seems to work better for me. The directions say to drink a little cupful (cup provided) at first sign of D, then half a cup at next sign, then another half a cup at third sign. I've only gotten to step 3 once, I think. It tastes awful so I try to get it down quickly. I will say that then I usually have some form of constipation for a couple of days after, but at least the D is gone.
As for the hemorrhoids, our pharmacist recommended the suppositories by Preparation H. I just couldn't do it. So I bought the "soothing pads." Amazingly, although the hemorrhoids have not disappeared, the pads seem to calm the situation down.
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Farewell to the cabin (left pic) and the deer friends we saw on our way down the mountain.
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Mae, I can totally understand why people want to live off the grid. You don’t see much wildlife today except deer, but it’s getting harder to find them too. I so enjoy your pictures. Thank you for sharing…
With regard to fatigue….no doubt at all that it’s the drugs. I feel SO much better (maybe not exactly like I used to before cancer, but…) since I’ve stopped treatment. It would take something pretty spectacular before I would consider ever taking any of those drugs again. I know what that means but what good is living if you are too sick to enjoy it?
BTW, I am a big fan of napping. Have napped for years (weekends when I worked) and wouldn’t have it any other way. LOVE a good nap!
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Thanks everyone for your replies. I have not gone at all today so it will be a surprise later which one I have. I never took Immodium last night because my rear just cannot handle another hard as rock poo.
Mae, I tried just one Immodium but I kept having it so had to take another, and then a third. Normally I would have just taken two to stop it. Still swings immediately the other direction no matter 2 or 3.I will try pepto or liquid Immodium maybe next time instead. I have tried the Prep H cream that you shoot in your rearand just ordered some more. It’s not hard at all. No pun intended. I also use a sitz bath that seems to help. We call it my butt spa. Katyblu you are so funny, no not that big d, I wish. Not feeling all gross like this though.
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kikomoon,
Honestly ime nursing and palliative care are the pros at managing bowel care. I'd keep asking till you get a treatment plan that really works. Find out what the $200 supp was. They're *not* all the same and you might be able to find a similar drug for less or get the pharmacy reps involved in getting access to the drug. We have someone on the board who's super knowledgeable about drugs so reaching out to her might be good to. PM me for her name
Rectal route medications are actually very well absorbed btw. One of the standard anti nausea meds comes as a suppository if you can't keep anything down and dont want/cant have iv access.
I have a chart of all the laxative options. They have different mechanisms of action, different onset, and different duration.
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Well for me it can go both ways. Mostly C but depending on what I've eaten the night before it could be D. I do take Imodium when needed especially if I'm going out for a day. It is a terrible feeling both ways. It is definitely the meds. My bowels don't know what the hell is going on!
I always have a long nap. Sometimes I sleep or at least rest. I have always enjoyed a nap. Years ago I was diagnosed with fibromyalgia so the pain and fatigue is two fold with everything on top. That's why when I'm in pain somewhere I have no idea if it's cancer or a normal pain. I finally get my next CT scan January 25th.
Mae- what wonderful pictures of the deer . Here we have red foxes and coyotes. The two provinces around us have moose and believe me you don't want to hit a moose on the highway. Unfortunately man has taken away their natural habitats and they wonder why these beautiful animals are wandering around the city.
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I know of some people who ask for a reduction in the Xeloda dosage and it helps. Could you possibly ask for a dosage reduction to see if that helps? Also, I have been asking my husband to install a bidet for such a long time. He finally did, and it's wonderful. No more sore tush
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moth, thank you for the chart, I am learning way more about laxatives than I ever wanted. I read that laxatives can also be habit forming!
LivingIVlife- mine don’t know what is going on either! I love a good nap but find I don’t need them very much, mostly on Herceptin day which is tomorrow, and I’ve done almost nothing go get ready for Christmas! Everyone is getting a gift card in a mason jar of candy. And maybe I will gift some family heirlooms to my nieces and nephews if I find time. Nothing fancy, just stuff that meant something to me or someone long gone.
KBL- yes I have room for a reduction and may get to that point. We also installed a bidet when everyone stockpiled the toilet paper. For those that don’t have one,If you have the means, I highly recommend picking one up, it is so choice. I wanted to gift everyone one for Christmas but my husband thought that was weird. Everyone thinks we are weird for having one, but I think they’re weird for not wanting clean nether regions.
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KBL~ that's a great idea. I'm going to have to inquire with my DH. We deserve to go in peace. Nothing else is peaceful for us.
Mae~ love those critters , it must be heaven up there. I'm so jealous. I went to the dollar store today. They have the best cards and gift bags and tissue paper. No one can beat it. The bags are beautiful and made well. Well worth the dollar. It was cold outside. Brrrr.
A few weeks back DH said to me “ why don't you go get your nails done?" I love getting. Them polished in gel. So I went thrilled. I went today again and loved it. It was so nice and thoughtful of him. He knows how much I love it
this was last time I'm obsessed with snow flakes now. Lol 
This is what I had done today. I love the snowflake again'. So winter like!. 0 -
Mel- love love your nails with the deep purple and snowflake. It must make you feel almost human. That's the way I feel when I get a pedicure.
Dollar store is the best for gift wrap and bags and all those things that can really add up. In town we have a strip plaza which we always laugh about because it has a grocery store then the liquor store then a cannabis store then the Dollarama store. It is one stop shopping !
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Living, what more could you possibly need? I think I need to visit PEI (sorry, is that the same as PE?) I LOVED the Anne of Green Gables books and loved that she lived on PEI.
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Sunshine- yes its the same as pe. Anne of Green Gables is so popular around the world especially in Japan. The Japanese come here in droves in the summer to visit Lucy Montgomerys house. Everything on the north shore is all Anne.
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Mel - the nails! And your hands are so nice. I think washing dishes by hand my whole life has given me early onset hag hands.
Hemorrhoids! My remedy. A big bottle of witch hazel (I buy mine at the vert supply place, it's for rubbing on horses, cheaper than the drugstore) and a package of those flat, round cotton pads you take eye makeup off with. Cut one of those pads in half and soak that little half moon wedge of cotton in witch hazel. SOAK IT! Then place that saturated cotton on your aching butt hole. Tuck it in there good so it will stay in place for a few minutes while you sit on the john and look at an Avon magazine or file your nails or text someone. You can text a good friend. "Hey. Sitting on the pot with a hunk of wet cotton stuffed in my butt hole. What are you doing?" Repeat this inelegant performance several times a day. Toss the cotton, do NOT flush! It will not break down well in a septic tank so keep it out of the system - into the garbage. In between soggy cotton treatments, I apply Anusol or PrepH. Hope this helps heal things a bit quicker.
Hi to all. Hope everyone gets naps and exercise as needed.0 -
Kikomoon, that’s great. As I said, I’m happy with the bidet. Gifting it to others, that’s an idea. My daughter thinks it’s a no for her. Maybe some day she’ll realize how awesome it is. I had my grandson yesterday. I would have loved to have put him on it after he had a blowout in his diaper, but it probably would have scared the heck out of him. Lol.
Mel, I absolutely love your nails.
Runor, great info
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Mel- Love the nails !!! I like the purple ones the best, with the snowflake. Makes it pop. And I love the ring too. Very nice !!!
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Mel,
Your hands are gorgeous! I also love the purple and snowflakes. I love that you went to have them done. Isn't it good to get out? I know it's cold up there, but your nails are worth getting frostbite!
Tanya, thinking of you. Are you ok? I'm worried that the idiot with the towel gave you something. Hopefully not Covid.
Speaking of…will there ever be a time when we don't have to see it, read it, hear about it, etc.?
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