My Husband, My Life, My Love, My Family, My Cancer
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Chicagoan I like that! I will think of it just that way. I need all the cheap thrills I can get! Ha! Ha! Livingivlife maybe I should get my stiff and sore hands working on the scarf I started knitting two years ago. Then there is aways closet cleaning. 😬
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Catching up on the thread. Not much news on my front. I worked over the Easter weekend which was a bummer. I had two really challenging shifts and I slept 11 hours when I got home on Sunday and spent yesterday trying to recover physically. I meant to go by and see my parents since I didn't see them on Easter but I barely got myself dressed. The fatigue was unreal. I'm better today and back on Wednesday so I am going to try and get a few things done around the house.
I talked to my mom yesterday to see if my brother had at least checked in with them for Easter. Nope. At this point, it's fine if he doesn't contact me. That he won't even check in with our parents on Easter just lights me up. But I'm not going to dwell on that drama. I just pray for him and do my best to let it go. I am very protective of my parents so I fight my inner bull dog when I feel they have been slighted. My apologies if this is TMI.
Moth - I can empathize with your decision to keep your certification. I still keep an imaging certification that I haven't used in 15 years but I renew it every year. I have a good friend, also a nurse, who is coming out of treatments for stage 3 breast cancer and doing all the Perjeta and Herceptin stuff now. Her cancer is different than mine, she was hormone negative HER2+ and it was very aggressive. She's in her 30s with two young girls. She moved from MA to CO and her nursing license is up for renewal but she doesn't have the education or practice hours to apply to have a CO license so she is letting it lapse to focus on being a mom and getting better. I get it. It's not just a license, it's a part of our identity in many ways. I'm struggling to hang on but I think at some point I will have to let go too. I am excited for you and your vacations. That sounds amazing.
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Gigi, I do the same as Living does, do things I enjoy doing and really just not think about anything but what is in front of me. If I am doing a laundry, focus solely on the laundry. I do the same with regular life things as well. Worrying or stressing take our strength and joy so keeping busy or thinking about something you like is good. Maybe treat yourself to a nice meal or snack or a nice drive after the appointment will give you something to look forward to. Can also try the 4-7-8 breathing method to relax body and brain. Breathe in to a count of four, hold breath for 7 count and exhale through the mouth for a count of 8. It does work and can sometimes calm down an active mind. This is coming from a person who is naturally anxious and has to consciously quiet my mind.
Deb, the lobster does sound good and thank you for thinking I am an interesting cook. I just try to put together cheap and nutritious meals while adding other vegetables I don't enjoy by chopping them up. Seasoning has been a great thing for me as well. When I get another freezer, planning on getting more stuff to use as well. I tried some asparagus at my brother's place on Sunday at dinner. I really did not mind it. Always told myself I would not like it but it was good. I could see chopping it up and putting with a bean or rice meal as well. We will see how much they are.
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Well, I’m several pages behind, that happened fast. Arrived at the cabin around 4am for the 2nd to last moving/hauling trip, treatment in El Paso tomorrow, then a local mountain man event this weekend. We’re good and pups are good, just wanted to join the pocket duty and check in before I take a much needed nap 🙂
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Emac- I'm sorry to hear of your friends diagnosis. Being so young with children is extremely difficult. I wish her well. Cancer can strip us of many things we use to do .
Mae you will have to let us know about this mountain man event
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lol Chicagoan.
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Emac, I am sorry to hear about your friend as well but will say that even with aggressive disease and I know all about that myself, it is usually those cancers that respond well to chemo and then targeted therapies of Herceptin and Perjeta. She can have hope for a good life with her kids and her friends like you. Many treatments even if she recurred from the stage 3.
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Hi everyone and thanks for the pocket duty this week. We travelled here to Houston yesterday and I had my CT today. It took 3.5 hours of mostly waiting. Brain MRI and bone scan tomorrow. Meet with MO Thursday. Hope he has results then. In the meantime, last night DH was checking in on the cats through his laptop, saying how pitiful and sad they looked. I said “ugh turn it off. Just let me enjoy my…scans.” Lol. It’s kind of like a vacation where the main activities are sitting around awaiting room wondering if the cancer grew. In the words of Bender from the breakfast club, so it’s sort of like a vacation, Demented and sad, but a vacation.
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Kikomoon, lol at your update, the cats and the breakfast club quote 😆
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Kikomoon- well, you might as well enjoy any part of it you can
Gigi- I just keep my mind busy most of the time in waiting. I do try to come to terms with the possibility of less than great results, but I don't spend a lot of time on it.
Mae - is that a Rendezvous you're going to? They had one of those up here. It was interesting, and I had no idea so many people were into that as a hobby. The kids and grandson had fun there.
Kitchen update- the cabinets are in. The new painter is working on them and it's looking good. Countertops should be here Thursday. Still having issues with the old painter - some people are so stupid.
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Still in your pocket kikomoon, quite the drive and wait but agreed, hope you can find something else to enjoy while you are gone.
I will be enduring similar waits as I have both an MO appt and Herceptin as well. As I have said previously, they were closed Friday and Monday so they will be extra busy today. Will likely have lunch at the cancer centre as granola bars just don't cut it for me. I will walk there. Hopefully will not be too slippery as it did snow.
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seeq, yup, it’s the mountain man rendezvous. Our friend who almost died from west Nile is participating in the old timey shooting and axe throwing, DH plans to hang out and cook but not compete this year. We may go for the day only, instead of camping out (me and the pups in the RV of course) but that part is undecided.
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Mae,
Whichever plan you decide on, have fun. Whenever you get a chance, I’d love to see another pic of the dogs. Can’t get enough of them. If you answered this before, please forgive me. How big will they get (weight-wise)?
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I love reading all the posts, even if I don't respond to each one. It sounds like we are a busy group of ladies!
Carol
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Not too much going on for me. It is quite rainy so will wait until it stops before going for a walk outdoors. Only frustrating thing are the multiple calls to reschedule my MRI. The people in MRI are unable to access my vein, they cannot use the port and the cancer clinic has stopped accessing my port for those scans. I rescheduled between 8 and 4 when the vast team is there to access my vein then I had to reschedule my Herceptin, found out the chemo suite is open until 8 so may not have to do anything but show up a bit late as the two appointments conflicted.
I did have a good breakfast. I made up a teriaki sort of thing. Used 1/4 white rice, put some frozen red pepper, chopped spinach and chopped mushrooms, 1/4 cup black beans. Microwaved those and put 1 teaspoon of ketchup mixed with 1 tablespoon of mayo. Added wheat bran for fiber and finally seasoned with some garlic and parmesan that were generously used. The mayo mixture does bind everything together and it was quite good, I don't have salsa and did not remember I could have used queso. Not too high on the calorie factor. The only thing I can think of to keep weight steady is cutting the peanut butter snacking. Go and have a tablespoon of peanut butter or a teaspoon as a dessert after my meal. Did a Paul Eugene workout whilst standing for 10 mins to help digestion.
If anyone needs pocket duty, I am always there with any snack you need.
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mara, what a pain to not have them use your port. I hope it all gets straightened out and that the scheduling gets sorted out, too.
Carol
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well just saw my Dr at MDA. Everything is almostFINE from the neck down but it’s definitely growing in my brain. Sucks but what can you do? I’m going to see my local RO about what else can be done. He will probably say nothing. I am also meeting with the MDA brain team about it. Sucks because I feel just fine! It’s like a ticking time bomb up there! Arrghhh! Well I’m weepy now but I’m like Scrappy Doo man. I’m not giving up! To (sort of) quote Hudson in Aliens, “NOT game over, man!”
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Kikomoon, sorry to hear you’ve got unruly rain mets too. We just zap em’ and move on, usually every 6mo’s-1 year. It’s weird, I’ve always felt fine too, no indication of brain mets or their progression. It sucks but small and slow growing has allowed me to live mostly unaffected by them. I’m very happy you’ve got an MDA team on this and I hope you feel better about it soon. When faced with unpleasant news, I usually have a cry, a drink and a laugh. Not sure if this is a great coping method but it works for me.
Hi to all 😁
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Kikomoon- So sorry to read your post. Mae and Mara have been living with brain mets and doing well. I hope that is the case with you.
I wonder why our MO's don't routinely do brain scans. They wait till there are symptoms. I know that is standard of care, but why..... Shouldn't we have routine brain tests along with our other testing? I am doing every 3 month scans to check the liver mets, but have only had 2 brain MRI's ever--- 1 with diagnosis as a baseline work up and another in 2019 when I had TIA symptoms (vision changes and dizziness). Both times clear of mets, but.... My sister had MBC and had brain mets.
I may ask my MO with next visit, since I had a family member with brain mets.
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kiko~I'm sorry to read your post. I am sending you hugs. Like Mae said hopefully they can zap them and move onward. I'm thinking of you.
Hello to everyone…..🌷🌻🌷🌷
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kikomoon, sorry to hear your news about brain mets. I hope some quick zaps will get rid of them.
Chemo day for me. I'm in the chair right now, dex just started.
I've only had 1 brain scan, and that was because the clinical trial required it. I've read some suggestions that her2+ and tnbc should be scanned more routinely as those have higher incidence of brain mets & treatment is easier if you catch them while small, but I think the official guideline is still not unless you have symptoms... frustrating for sure.
Hugs
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Kikomoon sorry to read about your Mets but I’m happy you don’t feel anything. I don’t like the plan to wait until you have symptoms to scan. Mae has some interesting coping mechanisms for bad results. Anyone else have anything? I like primal screaming howling at the moon and then a warm shower with edibles, comfortable pajamas and a good show to nod out on.
Moth I hope your treatment is going well today.
Waving hello to all
Tany
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Kikomoon, Mae and I have had them a long time, my MO thinks I had mine since back in 2015 before they were visible on CT scanning. You can definitely still have a good QOL and be just as strong as you are now. Early days, you will be given lots of info and how it is to be treated. You may not have had symptoms due to location or lack of swelling in your brain. Mae and I can offer experiences we have had here or also on the Brain mets thread as well. Susan there has dealt with brain mets for longer than I have as well and still is active. I know it is scary to hear brain mets but so many good treatments out there. More info from your MO and possibly RO will clear things up.
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Tanya~you’re adorable. That was a nice post
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Kikomoon, thinking of you, I'm so sorry about the new mets. Grateful that there are people here (Mara, Illimae) who can share their experiences with brain radiation.
Tanya, I love the moon howling/edibles/pjs strategy for coping. Going to try it myself. May startle my neighbors with the howling, but hey, we live in San Francisco. They ought to be used to it.
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kikomoon - so sorry the brain mets are being stubborn. I'm also glad that you're being seen at MD Anderson. I'm confident they'll have a good course of action for you.
Mae and Tanya - I love your individual approaches to dealing with 'unfortunate' news. Whatever works!
SFCakes - I had to laugh at your "I live in SF, so they should be used to it" comment.
Yay for countertops installed in my kitchen! I'm one week away from having a functional kitchen again - barring any complications.
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Kikomoon, I join the others with saying I'm so sorry about the brain mets.
Moth, I hope treatment went well.
Seeq, had my kitchen redone 10 years ago. Such a pain but so worth it.
Hi to everyone else. As you can imagine, I'm busy getting my house prepared. One week to go until move-in time. My garage looks like a bomb exploded all kinds of stuff.
I'm reading but may not b able to post for a few days.
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Kikomoon - so sorry about brain mets - but you are at a great place for treatment!
So the tendinitis the Ortho thought I had ended up being a pinched nerve. The pain was awful. I was pounding opioids like candy and sitting with heating pad nonstop. Couldn’t sleep, neck was making noises like bubble wrap. Xrays were horrible, cervical vertebrae all messed up. On top of that left shoulder is shot and needs replacement! Thankfully a steroid dose pack has made a difference. I’m having a EMG on Wednesday and will see spine surgeon again in early May (this is the same doc who said he wouldn’t touch my back and referred me to pain management). On top of this I’m still dealing with bone necrosis in my right hip which is very painful. I’ve been turfed around by a couple docs and am finally scheduled to see an Ortho oncology doc on Tuesday. I’m guessing the treatment will be hip replacement. Good grief, when we moved in November my game plan was to have a left knee replacement this spring. As the saying goes, you want to make God laugh, tell him your plans😝😝😝😝
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SeeQ and Goldens, I can imagine that kitchen renos are hard to go through even though the end result is usually beautiful and more functional and stylish or whatever the desire is behind the design.
I am not doing much today, it is bright and sunny, I may decide to take the bus up to Walmart and possibly pick up a couple of things there whilst walking through the store for some steps and maybe around the mall as well since I know the mall very well. Not sure yet.
My breakfast was out there but good today. I chopped up 1/4 cup black beans, 1/4 cup of chick peas, little bit of frozen spinach and mushrooms with a small clove of garlic. Cooked in a pan on the stove greased with a small amount of butter, only took a couple of minutes. I decided I wanted something different and also some additional protein so I added a teaspoon of real peanut butter, two tablespoons of the peanut butter powder. Seasoning consisted of steak and onion dry seasoning and a bit of salt. Also added a handful of wheat bran as well since the actual stuff would not likely keep me full for long. To bind everything together, took a small spoonful of queso and mixed with a small spoonful of mayo. Did not want it too spicy so it was just the right amount of zing. I don't think the peanut butter powder or teeny amount of real peanut butter took over. It was must mostly garlic and light queso taste that I percieved so I enjoyed it. When it comes to chopping stuff up, it is just the way I enjoy eating, same thing could be made in a pan without chopping if preferred and different spices of course.
I have also decided that I don't want bread products anymore as I can add rice every once in a while or make a small snack out of it. I had two loaves of garlic bread go moldy after not being used and I am tired of english muffins as well. Until I can get another small freezer, I don't get to really freeze bread products or other things I get.
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Kikomoon- sorry to read of the brain mets results but it sounds like you have a top notch treatment center and our experts on the couch with Mara and Mae
Moth- glad to know you received your treatment. Have you talked to your MO on vacation plans?
KBL- Yes the count down is on. It's a big change for sure but a happy time. Just make sure you take care of yourself along the way.
Seeq- your count down is also on for a running kitchen! It must seem like forever.
Goldens- your pain must be terrible. Glad to hear of the upcoming appointments to figure a plan going forward. If only it was easy just to replace a body that is falling apart.
Saying hello to all you wonderful ladies.
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