My Husband, My Life, My Love, My Family, My Cancer
Comments
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You got it Grannax! And remember your MO is your partner in this. Not the boss. You have every right to expect her to act like a partner would which is to listen to you, respect your decision and help you with resources.
Cold, gray day in western ny. We are making chili and homemade applesauce today after DH returns from the farmers market. Insomnia once again last night. I do not know what is going on. I have been sleeping so well for months now and suddenly I am getting about four hours a night. Insomnia is a side effect of Aromasin so I'm guessing that's the problem but gosh I am taking it first thing in the AM - you wouldn't think I'd be having insomnia 15 hours later. But also I'm noticing that the dexamathazone swish required with Afinitor is amping me up for an hour or two after I do the swish. I'm wondering if this is the culprit. I am swishing before bed. So for the next few nights I will attempt to get my four daily swishes done before 7 PM. Challenge! Let's hope it works. I'm tired!
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Feeling LOOPY today and agitated in some way. I dunno, I felt like this when my back was at its worst in July too, so who knows! Doing better today over yesterday and walking more around the upstairs every few hours, bearing more weight, and I can do some leg raises, etc. More tired (sleepy) than I have felt in the last few weeks. I wanted to try and make it to the end of the year with work but I think I probably need to take at least these next two months and sort out my back/hip for good and adjust to all these new chemicals in my system. This whole year has been traumatic and I need some time to process everything without worrying about dumb work stuff going on in the background.
Mae - that looked like it was a bunch of fun
Grannax - hold your ground tomorrow - I know for me I have always been someone who went along to get along but that's not going to cut it with my health anymore. It looks like you have a rebuttal ready for when she questions your decision - thats great! Maybe instead of one of those aprons with pockets for the breast drains we can just get some for scan/doctor meeting anxiety pocket duty
Philly - when you say you had fatigue from the goserelin/lupron shots - did you mean like sleepy or muscle? Well, I guess its kinda both if I think about it.
Mara- glad you achieved popcorn nirvana! Also, with the TENS - I know it says 'dont put on/near active tumors' - I've used these machines before for back pain but I guess I was worried about mets and does that count as 'active tumor' or do they mean don't attach it to something like your breast tumor (that imagery gives me a bit of a giggle)? I was intending to get one and hell, I was using my dad's the week before I was diagnosed, so I don't know why I'm worried about it now! Its not like you stick them ON the bone.
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Hello all.
Grannax- Definitely in your pocket Monday for MO appt. I agree with Moomala about our MO being our partner, not the boss. But I also understand how you feel in that I too do not like confrontation and agree that doctors tend to think that what they say goes. My prayers to you, my friend, that the lines of communication are open in your appt and things go well.
Moomala- So sorry for the insomnia you are experiencing. Yes try to use the dexamethasone a little earlier and see if that helps.
Sondra- Take care of yourself. Take off work if you think you need to. I am so glad I stopped working. (Last day worked was in June, and "retiring" as of Dec 2)
So this morning I was looking at the calendar for this week. No doc appts, that I know of yet. (Still waiting on insurance approval for PET and bone scan) No major appts or things to do. Just one of those "quiet" weeks when looking at planner. I prayed to my God that I would not get lonely or discouraged with my friends/family going off to work. That the depression would not rear its head. Then off to church I went this morning. My Pastor's wife came up to me and said " I hear you are filling in as our secretary this week". (The regular secretary out for surgery) I was surprised. I didn't know anything about plans for me to fill in. The Pastor then said, "Oh yes, I thought I would ask you if you would be willing to fill in as secretary." So.... I guess I will try it. No training on the duties so I will have to wing it, but hey gives me something to do from 9a-12p each day this week. God truly answers prayers.
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In your pocket tomorrow, Grannax! Hoping for an easy discussion with your MO.
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I took the summer off this year Sondra and it was wonderful for my soul. It was a good thing I did that because I was able to re-group, talk things over with DH about finances and decide to return to work part-time instead of full-tilt. Nowhere near ready for retirement as we are both self-employed and had planned to work until we're old. So much for that! Can't afford to be part-time but honestly it's working and DH is just picking up all sorts of slack all over the place financially. I don't get paid when I don't work so it was a really big consideration. I work just enough to keep me mentally feeling that I am productive, but I also have enough time off to be with friends and do a little more life exploration.
I was really trying to do some travel this year but that is not happening with this back or with our bank account.Oh this reminds me - I highly recommend the Everlasting Comfort brand of cushioning products for your seating. I use both a seat and a lumbar cushion in my studio and in my car. Really helps absorb bumps and things.
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Oh Candy how wonderful that your pastor thought of you to fill in for the secretary!!! I do find a little work during the week helps me stay above water emotionally. You can still earn money while on SSD. I have a friend here who has a part-time job and her boss is SO flexible. She can sort of come and go as she pleases depending on how she is feeling.
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Grannax, I am in your pocket to lend you strength toward your MO appointment. It can be extremely nervewracking having to go against what the MO has said or prescribed. It is hard.
Remember, you are the patient, you are in the driver's seat of what treatments you pursue given what you have available. You have to do right for yourself in spite of MO wishes. If they are professional, they should not take offense to what you decide to do. The MO is welcome to say why they feel a certain treatment protocol is better but you also have a right to pursue a treatment you prefer that is being offered. You can offer reasons why but to be honest, you are the patient. You decide treatments that are correct for you. If you are uncomfortable, bring someone you know that has your best interest and no fear about letting MO know how you feel about your decision. Firm is all that is needed, not confrontational.
On the very unlikely chance they will be unprofessional, remember you are not required to stay. You are welcome to leave.
YOU have the right to pursue your course of treatment. You do not need to justify or even worry about offending someone when you are dealing with your life.
I had to do that with my PCP once upon a time. It was scary because she obviously knows more medically BUT I know my own body and how I react to drugs. I was polite but firm and explained as much as I chose about my reasons. We often imagine a scary scenario when we speak up for ourselves as though that is asking too much. It is not, we just need to direct and firm while still staying calm. We need to look after ourselves since we live with decisions made, not MO or other doctors.
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Sondra, I have heard about TENS being an issue for mets. I don't currently have metastases in my body at this time, just my brain and they were almost gone. I confess, I would probably still use it myself regardless but that is just me if I was in that kind of pain. I don't need it often. I tend to like to spiky pressure balls. I lean up against my door if I have twisted my back or needing to loosen up my neck. Hurts and feels so good at the same time.
I was really bad today and made another movie theater popcorn. I used up a bag of microwave popcorn, melted a spoonful of the Wabash buttery coconut oil and this time just measured 1tsp of the flavacol salt. Turned out even better. Love my little popcorn maker and ingredients. I must limit to weekends though since I know that coconut oil probably is not heart healthy. I do like to enjoy these small things afforded me though. Digestive enzymes have also helped a lot too. I feel more confident to eat more things.
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Grannax definitely in your pocket Monday for your appt. I hate confrontation like the next one but sometimes just straight talk gets the point across and you feel a little better for standing your ground.
Whoever advised me to rest I am sure doing now.
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Grannax,
Reporting for pocket duty tomorrow. I agree with what others said....your body belongs to you. No negotiations needed. But I’ve been in your shoes, and was nervous too. So I’ll be in your pocket for support.
Let us know how things go.
Laurie
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Grannax, I gotcha too, sending positive vibes, hugs!
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Moomala- I have also read/heard a person can receive SSD and still work part time (under a certain amount monthly), but I am going to do this fill in secretary thing as a volunteer. The normal secretary does receive a paycheck. But I don't know how long my interim status will last and I was approved for SSD with the first payment due in January and I don't want to mess it up somehow. So I just want to help out for however long as a volunteer.
Sondra and Mara- I have not heard of refraining from using TENS units with mets. I do not have one, but have used one in the past with physical therapy. But not since the cancer. But good to know. Will have to read about it. Why shouldn't a person not use it with mets??? Mara- Go for the popcorn and enjoy !!!!!
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grannax right in your pocket for your appointment tomorrow. I’ll be throwing glitter into the air in there. Bringing some sparkle along. I hope your conversation with you MO is full of ease and compassion from them to you and that you feel heard and respected 💕💕💕
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pocket time! I’m here Grannax!!
Busy weekend saw the joker at the theater reclining seats. Heaven. It was awesome. Joaquin Phoenix is amazing in this film. Truly amazing Should get some oscars out of that performance. Like wow. Heavy! It’s a dark film and it’s sad, but it shows the needed much needed focus on mental health. It’s captivating the way he portrayed this character, and the tie into how Batman came to be, was a nice touch. Would see it again for sure.
Hope all in new treatments are doing at least ok!! Busy weekend for me I almost felt normal. Missed DH though!
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Thanks ladies. I feel very secure with all of you giving me encouragement. It's a late appointment so I'll let you know as soon as I can.💞
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Grannax, here for pocket duty with chocolate dip and boston cream donuts. I also packed some maple dip for myself while in this pocket. Hot chocolate is here too. Sending positive vibes to you.
Mel, glad you enjoyed your movie.
Not doing a whole lot today. Some laundry and getting Amazon packages. Did a lot of non perishable grocery shopping and bought a Panda portable dryer so I can tumble dry towels at least. Had to buy the indoor venting kit and mesh laundry bags which protect and minimize lint. I got the better vent one since it also has filters. Did not like the idea of using water to collect the lint. Humidity should not be an issue since I have a high speed spin dryer on my portable washer. The dryer comes tomorrow. So excited that my landlord said it was OK to have one. Was afraid it might break my lease. Might grocery shop once the deliveries have arrived. We will see.
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Mara~ Lol @ While in this pocket ! Lol sounds like a smorgasbord! Yum. I can only bring lemon bars. It’s all I have! But they are homemade and delicious!
Grannax~ that’s why this is your home! Waiting here for your update. Hugs hugs and more hugs!
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Micmel I saw the Joker this weekend too. I LOVED it!!!! He really should win like 100 oscars for his acting. Absolutely phenomenal. I would like to see it again too. Very dark and sad. But amazing.
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Philly~I totally totally agree with you. He really is amazing. I was riveted by every movement, every word, facial expressions, I mean like fantastic acting going on there. Really enjoyed and didn’t want it to be over. When he was on those steps I was like omg this man is an amazing actor.
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yes sooooooooo amazing!!! He’s incredible.
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My friends cat has such an appetite!0 -
He looks like a bigger version of my Tigger. Wow, very handsome cat. Even though it is not good for them, I quite like fat cats. I had a calico named Dippy who was actually a small cat but extremely obese. Not from her diet but just how she was built. She looked like a football because her legs looked very tiny under her girth. She was a great cat. Ironically, she died from breastcancer. Lasted 3 months with it. I had to change her dressings every day and she just lay and let me do it. Ulcerated and very smelly but I did for love.
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Mara~♥️🌹 that is so touching that you cared for your cat so well. I love that! You’re a good person.
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Mel, I loved my cat, I called her my baby. She was the first cat that ever chose me as her person. Other cats did not like me because I tried to make them sit with me. She was the first one I let come to me. Taking care of her was the least I could do for her.
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I had three cats growing up, lucky who was a black cat... king Siamese... ....not the friendliest, the other was a red tabby cat named rusty..... lucky was my favorite he would lay with me and he would talk to me. Say “HI” And bow his head. I loved that cat... it’s funny what you remember as you age. Remember when times were simpler. And not filled with cancer.
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Micmel, the pic of your friend’s cat looks like a small head was superimposed in a large body! Large appetite indeed
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I had a black cat who had a little head on a large body. He was not fat but just a tiny head. It was funny to see. At the shelter he was called Seiko but we quickly started calling him Psycho instead. Not because of the movie, just thought it suited him.
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This is my friend at the dispensary, at first I didn’t know what her costume was, but then I realized it was a pot head.. lmao. It was very funny. Some of them were actual leaves. It was a funny day and I had forgotten it was even Halloween. Shame they didn’t give out samples....lol0 -
reporting for pocket duty grannax 🙂
Had a doctors appointment and H&P today. They did lymphadema measurements and I was at the minimum threshold for PT, which I’ll begin soon to hopefully keep it from becoming an issue. Other than that, kinda tired and I have a super fun sinus headache, so it’s a lazy Netflix night.
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