My Husband, My Life, My Love, My Family, My Cancer
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mel: oh dear sweet Mel. Valium. Doctors and people treat it so casually. It is not a benign pill. Hang in there.
I had my PET on March 15 while DH was in the hospital. My MO was going to be away until March 25 and asked if I wanted to talk to his locum or defer. My answer was vague and I guess he took it as a deferral but I wasn't booked to talk to him until April 12, my usual every 6 week chat. I was at the infusion centre yesterday and asked when Dr S was back. This Monday, but he was up to his ears in appointments. But LO - there was a time slot on Wednesday so I grabbed it. I didn't want any band news while I was going back and forth to the hospital and then getting DH settled into a comfortable routine here.
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Mel- My Mom was on Valium for a period of time. Then Xanax. Yeah, those meds can be hard to get off of. Good that you are getting off them though.
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Sunshine, believe me, my energy level is crap most often. I am trying to be more active, for my mental and physical health. Cane and lack of snow helps a lot. I don't walk fast. Laundry provides enjoyment, I enjoy surveys and plenty of sitting, dusting is often neglected in favour of other things. When I do things, it is mostly mental stubborness more than anything. Still going to work toward walking to the mall again.
Today, thinking of trying to make two pancakes and some beefless ground this morning. Will try the pancakes in the sandwich maker and just microwave beefless ground as it would burn in sausage maker. Add some maple and bacon seasoning and buttery syrup. May need trip to grocery store to pick up cooking spray which I keep forgetting. That could take of my walking needs. We will see how many rest breaks I take today. I don't mind them, usually less than 20 secs. Cane still makes me confident on my feet. I also may stop at my burger joint later, but not on the same trip as the grocery store. Separate trip for that. Got some money on my debit card for treats like that from doing surveys and games.
Tomorrow will be a day to take the bus to the mall for some mall walking and to check out the Zellers, a discount store we had here until it closed in favour of Target several years ago. Target did not last long. Will be fun to check it out, the weather is not as bad as yesterday was.
This week only app't I have is the results of my MRI on March 17th. I am sure it is fine since if it was not, I would have been called in, leave the door of possibility of progression just a fraction open but I am not expecting anything untoward. That is about it. Hoping people with issues they are dealing with find today with some relief, Mel, withdrawal really does suck and I hope the end of the road is seen soon, Goldens and everyone, in your pockets always.
Edited to add that I decided on a bowl of oatmeal with half a ground pre cooked sausage added in before heating, seasoned with maple bacon seasoning and using the pancake syrup as my sweetener, we will see how it tastes, really want to get out earlier vs later today I think.
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Well, I finally made it home, both ways were difficult but I stopped many times and sat on the bench in the grocery store when got there and before I left as I had a granola bar. I felt low on blood sugar and light headed a bit until I sat on a bench. I was only going to wear my short sleeve shirt as I run hot but did not. Got what I needed and may throw the bus in there for the first bit until the walking feels more routine. I tend to lean to my left as well so need to keep conscious. No stumbles so that is good, did not try to walk fast and gave positive talk that I could make it home as well. My mind says I'm tired but that is just a thought that hangs out, even if it is not true. I do know my lack of sleep may have played a part too. 11000 steps which took almost 2 hours based on all the short rests and sitting on the bench at the store. I was smart enough to bring water
For anyone thinking I have great stores of energy, I don't, just determination when I want something. I like to prove to myself that I can do more than my mother thought I could do. When she was still hanging with her best friend, she told her best friend I could not do anything when it came to looking after myself. Her friend told me this a couple months after Mom died, thinking it was a compliment on how I handled her death etc. No ill will toward what Mom said, think her friend should have kept my mom's statement to herself as it hurt my feelings to know that Mom said it. So when I do things that are above and beyond for myself or try foods or save money, I know that statement is not true and it did not or does not matter what others think of me or what I am capable of.
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Well, me again, hope people had a decent weekend as much as possible, thinking of Goldens, sunshine, Mel and anyone else needing a pocket resident, I can split up.
Today I will take the bus to the mall for some mall walking as I stated earlier, I want to check out the store I mentioned before. Doing laundry now, not sure what I want to eat yet, probably will be a mix of things. I am liking a dry ranch packet I got mixed with mayo as one of the seasonings. Used that with supper which was boxed stuffing mixed with black beans and the other half of sausage I made yesterday to bind, I was in heaven. This morning, I will likely do some spinach, beans, little cheese and beefless ground in the egg cooker and top with a poached egg. Requires less of the other ingredients as we are talking a teeny tray. Lunch may be a pancake but a bit of cheese put in for some extra protein, thinking that would taste good. Thinking I could also add tiny amount of oatmeal to the mix or wheat bran to beef up the fiber. Small amounts as I do not want to completely remove the original pancake taste.
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Gm ladies. Mara~ I love reading your posts. It’s like you push and push yourself like none I’ve seen. You go girl. Butt be careful out on your journeys.
Hope everyone’s doing okay. I know how very hard this is for all of us. Love to all
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I also smile when I read Mara's posts. I look forward to reading this thread and just finding out what everyone is up to. When I am not at work I have a very quiet life and so it's interesting to me to see how you all manage with this disease as I do. I'm a little sore today. Yesterday I pulled out the trimmers and trimmed my rosemary hedge back from the garden bed and the fence. It had gotten overgrown. I haven't really started getting the yard in shape yet. We are still set up for several weeks of rain and cold temperatures. Yesterday was a beautiful day with blue skies and sunshine even though it was cold. I couldn't help myself but be out in it and tinker a little. I'm so tired of gray skies I put a chair up against the wall of the house and soaked in the sun. We are back in the gray clouds today so I'm glad I did. Hope everyone is well, I'm also here for pocket duty for anyone who needs it.
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shwe~ thank you for your kind words. We need all the support we can get. Nice to see you here.
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Well, I was going to take out the trash and try to combine the other bags but it was too much for me, shuffled the bags so two bags were at the end I put my single bag, and the other three were together. None were heavy, one has holes but I was not picking trash up off the ground. Property manager notified garbage not picked up last week, if they don't take it this week, I am not taking it back in the house, they will need to have someone else come get it. I will also complain to the city about it. 3 bags or containers per unit can be put out.
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In all pockets to those who need it as always, I am sending healing thoughts to all. For those not struggling right now, I hope you have a wonderful day.
I deleted post last night as it was just about the garbage. I went out with mine and rearranged piles so that the containers were there for some and no more than 3 per pile, it was all taken.
Today is beautiful and sunny so post breakfast, taking some shorter walks around the block, looking for same number of steps but not going overboard. I am determined but no longer reckless. Think I will save a possible mall walk until I see DB this week.
Foodwise, keeping it simple, thinking one or two poached eggs on english muffin, lately, poached eggs seem to be my favourite. I am also looking at my canned chicken and turkey. Thinking that with the ranch seasoning, mayo and canned meat, make up some nice chicken salad. We will see.
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mara, you always give me ideas! I was trying to think of something I could eat with more protein. Then I remembered I bought some canned chicken at Costco. It makes a good chicken salad. I like it with mayo, celery, red grapes, slivered almonds, and a bit of curry powder. That, along with my Zuppa Toscana should suit me well today.
I'm off to get a PT eval today. I finally (again) decided on my Medicare plan. Part A only. Will continue on DH's insurance and save Part B, D and any supplements for later.
I hope everyone has a great (or at least decent) day.
Carol
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Sunshine, in your pocket for the evaluation. As far as food, just trying to find different things to make from what I have. I figure, it is easier to add things to pancakes that add protein and fiber, I do like the idea of using the tinned meat that way too. The ranch dry seasoning in mayo is to die for.
I think I will have some lunch and take the bus to the mall for some mall walking since delivery has been made and bills have been set up. I like to make sure the rent comes out on the first as soon as it pops in my head.
I did get a couple of zippered containers that are really nice and gray with zippers. They will hold extra blankets or food or whatever, could even hold food I suppose. Already ordered 4 more which came to 12.00. I've been wanting containers that close and these may fit the bill, don't believe I can was them so I will spray with enzyme/alcohol and fabric softener spray. Should remove any lingering odour from being shipped. Got them from Temu, think wish.com but better and arriving faster. Only things I would never buy are electronics and such but there are a lot of inexpensive storage solutions for me. I am going to avoid the site until I have saved money from the surveys and games though, too easy to go overboard. The containers are a good start and do fit my fleecy throw blankets. Inexpensive can become expensive if not careful.
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FINALLY! Left shoulder replacement scheduled for 4/26! Can’t wait…..
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that’s good Goldens. I hope it is a quick recovery for you sweetheart!
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Hi all. So you probably know from my posts that I have ortho issues with my joints. That causes me the most problems right now, since the cancer is "stable". I have rheumatoid arthritis and osteoarthritis-- shoulders, thumbs, back, hips, and probably knees - but I have not had x-rays of the knees for several years, but they hurt. I have gotten 2 steroid injections in my right hip with no relief. I am doing PT to strengthen the muscles surrounding the hip joint. But PT cannot "fix" the issue of bone-on-bone of the hip joint.
So yesterday I went to the ortho doc locally for a 6-week follow up from the hip injection. She came in the room and said "how did the injection work?" I said it didn't. She said "that is the 2nd one right?" Yes. She then said "are you ready for a hip replacement?" I said "wait, I thought last time you said that with the cancer you would not do surgery". She said that she would not be the surgeon-- each doc in the clinic works on different body parts-- but that she could ask her colleague that does hips if he would do the surgery. And if he didn't want to touch me, due to the cancer, then we could look into another doc outside the area-- St. Louis, Missouri instead of Southern Illinois. She said that women are living longer with MBC and this is a QOL issue for me. She did say that it would not be easy. I would need to go to a Rehab center for 2 weeks post surgery, since I live alone. And, she is not sure how my body would respond to the stress of a major surgery.
I will consider it, but I am not doing it yet. Just too much to consider. And I am alone with no support system.
Koodoz to Goldens for having hip surgery and now shoulder surgery. You are one tough mama.
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Candy~ I am sorry you’re in pain. I totally understand you’re concerned about recovery and the toll it will take on strength that you have. I hope whatever you decide. That it’s the best for you. I’m wrapping you in a hug.
Thinking of everyone.
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Goldens, I am happy as well and in your pocket for fast healing.
Well, I have been enjoying the mall walks so much, probably do another one today. I do not want to stay home as it is so boring. Laundry being done now. The Zellers that opened has some good prices ( they were known for lower prices) but I was not super impressed with what was offered. I'll stick to Walmart or giant tiger for things.
I had a bad supper yesterday. Sometimes the beans but me if chewy and it really grossed me out to the point I threw half of it away. Going to dry out the beans buy chopping them along with some peanuts and wheat bran that were pulverized. That will make a more dry mixture for me. It all tastes the same and binding with mayo or something else is nice. Also have some ground beef to cook up as well, starting to see the back of the freezer as well. Still addicted to the ranch seasoning as well.
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Good morning, all.
Goldens, I wish you a good outcome and speedy recovery, too!
Candy, I hear you. I had a PT eval yesterday for my hip. She gave me some exercises and I'll get 8 sessions to help strengthen it and work on my mobility and balance. I hope it works. I don't want to even think about a hip replacement!
Mel, how are you this morning? Thinking about you and hoping each day is better than the day before.
Mara, I know what you mean about seeing the back of the freezer! I find stuff back there that I had totally forgotten but seemed like a good idea when I bought it.
I'm lately into making little dish scrubbies. (DH thinks the word "scrubbie" is funny.) Anyway, it's made with a strip of tulle that's about 2 inches wide and about 12.5 yards long. (Half of a 25 yard long roll.) I saw the pattern online. They're knit up really quickly, and are easily done while waiting for an appointment, or watching Hallmark movies.
When candy was talking about QOL and living longer with Stage IV, I had the thought that sometimes I just wonder what the point of living longer is. What about the "good old days" when it killed you quickly and there was no prolonged suffering. I don't have a death wish, but some days…
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Here is a photo of the tulle I rolled up, a project in progress, and the finished project. The finished one is about 3"x3".
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Oh, that is so cute. I love to knit but I can't say I am super crafty overall.
I got to the mall, weather was fine though cold when I waited for the bus but now we have some wind. When I waited for the bus at the mall, the bus shelter was sort of moving around. I only get off one street up from my place and I got soaked from the wet snow. Overall, enjoyed the walk, did get a couple things at Walmart, free from surveys and allowed a donut. I did not stop at all or have to sit down. While I was having my donut and water, my DB texted and asked if I want to go to Costco, I said sure so more walking tonight. I am sure I will be fine tonight. I went to the Zellers store I talked about, supposed to be a store for people on a budget but I did not notice much of a change. I also chickened out of an escalator, got nervous so had tho use the escalator. Better keep track of that, it is kind of weird.
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Candy - I understand you’re wanting to think through a hip replacement, especially being alone. You can always reach out to social services at the hospital to see what can be done to help you. Only you can determine when pain relief is not being controlled. This arthritis stuff is the pits. Do you take any rheumatoid meds or would there be a conflict with the MBC meds? I have a best friend w/RA - she is able to control it with methotrexate injections and going gluten free. She thinks avoiding gluten has made a big difference. I just can’t believe how much my joints have degenerated since starting Ibrance and letrozole in the fall of 2019. The shoulder will be my 3rd joint replacement in just under a year. Hip done in May, knee in October and now shoulder in April. My MBC status has never been an issue in terms of the surgeries. My internist will not be happy (he’s crazy conservative and feels I need to be extra careful with surgery given my complex medical issues. It’s not like I’m having liposuction or some plastic surgery!). I will say the hip surgery was a fairly easy recovery compared to the knee. The Ortho assured me the shoulder surgery will be somewhere between the two and might even be easier since it will end up correcting the fracture. I can only hope so.
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hello Elaine ~ welcome to our room. Good to see some lurkers checking in. Thanks for sharing some good news. I hope our ladies have as good results. Hope you have a great day.
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Goldens- I am not on the RA meds- conflict with them and the cancer meds. I have not went gluten free. The hip is beyond that point though. It is bone-on-bone. I am not real proficient looking at x-rays, but even I can see that there is no cartilage space from the ball to the socket. My ortho doc said my hip was "terrible, terrible" her words. She did say the hip surgery is easier than knee surgery.
Mel- I go to PT twice a week. I have had 8 sessions, today #9. I have home exercise papers. They usually re-evaluate after 10 sessions. Since the PT will not really help the hip-- bone-on-bone and need surgery-- they will probably stop after 10 sessions. I can continue the exercises at home. The therapist does some stretching of the leg that I cannot do on myself, but I can do most of the exercises. I tried the steroid shot, and then PT. The next usual step is surgery. If a person cannot do surgery for some reason, then it is medications-- NSAIDS or pain pills.
With a fracture like Goldens has in her shoulder, then she needs surgery. But even my ortho said that hip surgery for arthritis is considered "elective". Nothing is broken in my hip. It is a QOL issue since I don't know how long I will live with the cancer and I am going to continue to have pain issues with the hip.
Edited to say--- I just read the Thread that Bestbird (Anne) started. She is going to Hospice. We have lost so many sisters lately. I always look on their profiles to seen when they were diagnosed. Bestbird was 2011-12 years- and she is one of the older ones. I am at 5 1/2 years. Really, how long do I have??? I may not live too long with the hip pain. It puts it in perspective. I am 52 years old. If I could think that I may live another 30 years, to 82, then I may want to have the surgery done. But, what if I only have 5 years left?
Makes you think.
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Sunshine, glad to hear from you, I find it hard to get to my feet , have to cross legs and clip them with foot on ottoman. Just vacuum up after, not too bad. I am glad you got a pedicure.
Mel, I am so glad you are feeling better as well and getting some well needed sleep too.
I have my MRI results to check on brain to see if it is still NED or at least stable. The cancer clinic did not call before now and I had my MRI almost two weeks ago so not anticipating any bad news. Will walk there and home I think, nice and sunny.
Yesterday I did do the mall walk and when I was waiting for the bus, whole bus shelter was shaking. Got off the bus near home after the walk, this super heavy and wet snow was falling, could not see anything in front of me and I was soaked when I got home. The evening was still breezy but that wee snow storm lasted less than an hour. Weather is weird. I also forgot my cane when went to visit the new building for Costco, it is just bigger but the crowd was insane, luckily, there were not any people trying to be impatient, we were packed. Older DB commented that I did not buy anything but I said these grocery trips are sometimes just a social thing for me.
Breakfast was fairly normal. Put beans, cheese, ground beef and wheat bran to dry it out a bit. Pulverized in my chopper so was a dry texture. Prefer this to chewy beans. Microwaved after adding 1/4 cup precooked white rice on HIGH for 60 seconds. It was bound with mayo and steak and ranch seasonings added, mixed it all together, filling.
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DH just left, he’s off to LA for a friends wake. This will be the longest time I’ve had alone since before Covid and I’m going to soak it up. I love time to myself and plan to do a few chores, a puzzle and start a new mystery book via audible.
Saturday looks to be warm and sunny, so I’m going to check out a local flea market and treat myself to an ice cream cone, simple pleasures.
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Illimae, I love those. I enjoy the chocolate twists at Cosco, so yummy.
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Sunshine - you think you could crochet those? Maybe ill look that up. Currently waiting for my new tunisian hook and cord to arrive to start on this blanket pattern I got. Id prefer to work with real wool, but not in the quantities required for this, so I guess its going to be acrylic. I see people crochet dishcloths and stuff, but I would be too nervous about bacteria lurking.
Regarding PT - I go roughly every two weeks, mostly as this is likely a tendon issue and frankly we are just waiting for me to strengthen up. However, Ive found that some exercises that work at first become painful after a while, so not sure what that is about. Instead Ive taken to the pool exercises a lot more and today was fantastic - I was doing a little water jogging and felt a 'pflump' like the tendon squished over a little to the right and it was like the aggro pain clouds parted and the sun of normality shone through. Lasted about five minutes but it was glorious. Still can't kick, will probably need a remedial swim coach when this is through and I intend to get a proper sports trainer weekly to keep everything tight. Im walking without pain on the front though stlll limping; frankly I think Ive had problems with this leg for so long I cant remember how to walk without a slight limp.
I did ask for a referral to a hip specialist doctor, have to call them tomorrow and see what that requires. If its a suspected tear itll need an MRI with contrast which I dont get at cancer hospital. There's been days, though, where Ive been worried enough about needing a hip replacement that its been upsetting. This is all very 2 steps forward and 1.5 back.
Mae - isnt self time great? Mine is out tonight with his data nerd buddies recounting all the work stupidity he tries to vent to me and I dont understand. Have fun at the flea market!
Getting to be Spring here - got cats shedding all over the joint!
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I am back home from my today's PT session. I gave the therapist an update on what my ortho doc said. Medicare approved me for 10 PT sessions, so I am going to complete those-- Mon and Thurs next week. They are giving me even more instruction papers to do more exercises at home. So I guess I will stop therapy after next week and just do the strengthening exercises at home.
My therapist wants me to go ahead with surgery. I was thinking about it on the way home. If the cancer never came, and I was a healthy 52 year old with a bum hip, then I probably would do surgery. But, with the cancer in my body, with the cancer meds that make my white cells low, and with the 2 blood clots I have had since the cancer diagnosis, I just don't know if I should risk the surgery. I watched a video on the internet about hip replacement. They "clean out" the socket and attach a prosthetic socket. What if the cancer has made the bone brittle?! Then they place the ball prosthetic into the femur. Again, my bone health? Also are there microscopic cancer cells that would get loose and travel to other areas of the body?
I am probably overthinking all this, but the cancer does play a factor in the decision. How long until the cancer progresses with me anyhow? Most hip replacements last 20 years. I am probably not going to live that long anyway.
This is not a light decision. Cancer. Living alone. Should I just deal with the pain, and just forget about a surgery?
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Candy~ How I wish the living room was real. We would all take care of each other. I can understand your hesitation for any surgery really. I got my reconstruction surgery half way done and my ass was kicked from that I vowed no more surgeries. Qol. They told me that when they took me from my meds. But it caused me misery , just be sure to ask all questions before you make your decision. Being alone makes it tricky. I just want you safe. Is there. RehAb facility that you could go to for short while till you’re more mobile? For safety reasons ? Just thinking out loud for possibilities. Keep us posted. Please.
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Hello, ladies. I've been reading along, sharing everyone's ups and downs. I'm in the pockets of all those that are struggling. Hugs and gentle nudges of encouragement, where needed.
Mel, so glad your withdrawal from the meds eased up.
And Goldens! Finally able to move forward with shoulder replacement. Hurray!
Mara, you work so hard to be the best you can be, and to make your meals interesting from day to day.
Sunshine, I had to laugh when you said you wished it would just improve without any effort on your part. Sounds like me! Lol
Candy, I hate trying to make those decisions that make your head spin with all the risk vs. benefit possibilities. It's just when we need a crystal ball, or something.
Sondra, I hope your 5 minutes of "normal" grows and grows.
I'm sorry to hear about Anne/BestBird. Each loss seems to hurt a little more.
Things are mostly quiet here. I had my quarterly appt with MO and bloodworkwas all good (enough). We did have an encouraging conversation when I asked about how long other patients of his have been on Verzenio. I also had my initial Medicare well-care appt, with that long standard questionnaire. Some of those questions are hard to answer. Somehow Excellent/Good/Fair/Poor doesn't seem to fit for "How's your overall health?" Well, gee, I guess I'm pretty good right now, but but I have incurable cancer, so....?? I do like my PCM, though, so that helps. He ordered a Dexa scan and regular bloodwork the MO doesn't order, scheduled for mid April. And he gently nudged me to, at least, get a Medical power of attorney in place.
Next week is a dentist appt for me - finally rescheduled after January ice storms - and an ortho appt for DH, who really needs new knees. Then, audiology for him, Dexa scan for me, and we both need vision appts. Everything is at least an hour away, so it's a good thing we're retired. Lol.
The most fun thing is that we've scheduled a family cruise for July. Both daughters, son-in-law and grandson are solid. I'm really hoping my son, who is currently deployed and at the mercy of military scheduling, will be able to make it. It's hopeful, but we won't know for sure until we get closer. My semi-annual PET-CT is at the end of June, so crossing my fingers for (and expecting) good results then.
Waving to everyone in Mel's cozy living room.
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