My Husband, My Life, My Love, My Family, My Cancer
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So, just checking in after today’s Beatson visit. They gave me Xgeva which has to be every 6 weeks in stead of IV Zometa every 3 months. We’ll see how the SEs go on that but my NP is confident I should be OK. They also dropped the Capecitabine dose again to 2600mg per day for 10 days in a 21 day cycle plus a blood draw to test for the enzyme which helps metabolise the 5FU, which we had just assumed I would be fine with as I had CMF in my original chemo 14=years ago and was fine on it. However with the toxicity I’m experiencing, my NP wants to check and thinks that might be the issue. She said if I do have an enzyme issue I should have been started on HALF the dose they gave me! We’ll see how the results go from that, but if it’s not that we’re a bit flummoxed!
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Candy, if we could only relax like our cats, drop off to sleep for a couple of hours, be lively for a couple more hours, eat and go to bed again.
I like the idea of yoga but not really made a full attempt, I would likely start with a chair yoga for myself since I have trouble getting up off the floor. You would think with all the walking I do, that would be easier. May start practicing that more too with some basic dumbells for my arms.
I have decided to accept my body for what it is and the weight I am now. Obviously, with all the walking, it is not lack of activity. I have also reduced calories too along with the extra walking. I know beans are carbs BUT prior to eating them and the spinach, I passed out regularly and I do not like enough other lower carb stuff that would give me the same amount of iron, can't afford to buy specialized food either. I am enjoying the meatless options though. I tried a meatless sandwich that was less than half the calories of a regular burger I used to get. It was the lightlife stuff I think. Really did taste and have the texture of beef but less fat than actual beef.
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Runor ‐ you cracked me up with your armchair yoga description! I hope everything moves along as quickly as possible for you. Yes, the waiting is "the worst"!
Karen - your word is so much nicer than mine. I was thinking more of a donkey with a low IQ.
KittyKat - glad to know you're back home. It's crazy that we can say "It's just a kidney infection" or some other malady and sigh in true relief, but here we are.
Candy - I think it's great that you are trying yoga. You're a step ahead of me. I've never been worried when I could do a certain stretch, pose, exercise, etc. I figure being there and doing the best I can is good enough. Now, I just need to get there. I'm trying to get motivated to try Chicagoan's video.
Chicagoan- thanks for sharing the video!
I know I'm missing lots of people. We have been busy here. I put my garden in yesterday, finally (kinda late for here). That was lots of work to get it ready. Next, i need to get the trailer ready for camping next week.
We are seeing a lot fewer masks around here, but there are still many who wear them. I think most stores have gone to recommending, not requiring, masks. Vaccinations are open to anyone 16 and above. Almost everyone I know is vaccinated, and our local infection rates are very low. I'm more worried about the tourists than the locals - and I don't go where they are. I mask in stores when I have to go, but not outside. LOLOL - I got carded when I bought a bottle of wine when I was out yesterday - I'm close to 60 - it had to be the mask!
Waving to everyone and wishing the best!
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Runor-Why don't you start your own thread to discuss death and dying issues and just put it somewhere that is not Stage 4 only? With your writing skills, I think you might generate productive conversations.
Best wishes to all who are waiting for results and/or next steps.
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SeeQ, I will probably adopt mask usage even when the pandemic is over. I have really enjoyed the lack of colds I have had to put up with. No flu on my end either. I tend to follow my own beat when it comes to what I do and wear for comfort.
I finished my walking outdoors, got my 10000 minimum I wanted in 3 separate walks, no difficulty either. I did wind up masking for the last one because of little pesky black bugs that I think are attracted to sweat. Made them much less of a bother and gave my lungs a good workout. I also had two tiny meals between the walks as well. Basically half of what I would have had for breakfast. If I want more steps, I will do them in here as a light march on my floor. Going to maintain the early bed as long as possible as I can wake earlier and still have had a good sleep. Going to be warm tonight so am going to use both my fans. I hope my AC will be working, asked older DB to look into it as I want one installed by May.
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Karen - I hope they get all this confusion worked out. At some point it becomes a lot to keep straight in your head. I walk into rooms and forget why I did, so I can't imagine keeping all these treatment issues in any sort of sensible mental order.
Candy - that's my kind of yoga! As long as eating mice is not part of it.
The Mods reached out to me and suggested a place to start such a thread. I will consider doing this.
Everyone else, in your pocket, along on your walk, humming to you as you rest, or smiling with you if the sun is on your face. Hugs.
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Mara, I was just talking about the current situation here. Things, here, are really improving, but that may be temporary. I don't know when, or if, I'll stop voluntary masking. As the situation evolves, we'll all have to make decisions about what level of self-imposed restrictions we need and what potential risks we're willing to take.
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I am sore. They found metastatic breast cancer in both ovaries. I had a hysterectomy as well as both fallopian tubes and ovaries removed. Everything else looked good visually. Several biopsies were obtained and pathology is pending.
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dutchchris, I’m sorry your going through all that and hoping treatment gets you to a good place.
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I cross posted this on back mets. I saw the rheumatologist yesterday. She was excellent. She says she's fairly sure that I do NOT have my back issues due to inflammatory rheumatologist as a SE for my immunotherapy. She thinks my back issues are a direct result of my degenerative disease, back mets, and probably weakened bone. Told me to keep taking painkillers and wait for other docs to weigh in. (I'm now on dilaudid).
I also got a plan from the spine board. They are proposing vertebroplasty for part of my lumbar spine. If that doesn't work for the pain, they've recommended radiation to the same area.
Now just waiting for info about how this will proceed. Touching base with my MO tomorrow, and hopefully will have more direction.
I see all of the things going on with everyone, but unfortunately, I have been in so much pain and so focused on my own health issues that I haven't really kept up appropriately with everyone's issues. I hope you are all doing okay, and I'm thinking about all of you.
Bev
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SeeQ, I get what you are saying and I am happy that your location is so far along with vaccinations. That is really good.
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Dutchiris,
Wow. That’s a lot to deal with. Prayers for a swift recovery.
Bev,
So sorry you are in so much pain. It’s taken me awhile, but I am almost pain free thanks to my palliative care team. They are amazing. Prayers for you too.
Runor,
Apologies my friend. Forgot that you do not have MBC (so glad you don’t). So glad you post here though. You are in my thoughts a lot these days after what you’ve been though. Take care.
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Dutchiris, I hope you get on top of your pain quickly, it's not a good place to be but it does look promising that they have got all the diseased tissue, hopefully the pathology will confirm it. Holding you in my heart.
Bevjen, I hope they can finally get you the relief from all this pain that you truly deserve and can get back on track with your treatment.
Candy, your friend has no idea of the trials we have just to get through the day, not that I woud wish this on anyone but if he was to walk in our shoes for just one day he would have a complete change of attitude.
Runor, you're in my thoughts everyday, as is anyone of us that's struggling right now.
So here I am, happy to have a kidney infection, who'd have thought it indeed. Sure beats the alternative of another change in treatment in 4 months. Have a restful evening if you can, I'm just about to start my day, ready for 3 days with Master Finn.
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Oh, Dutchiris, wow, MBC mets to ovaries. You don't hear of that much. Scary how it can go to any site of the body. Changing systemic treatment? Or since they removed everything with hysterectomy then stay on same meds? Rest and recover.
BevJen- Good that it is not the immunotherapy. Will be interested in what your MO says. I wonder about something for my chronic degenerative back issues. Tired of the pain and chronic issues. So far, they have advised lumbar fusion (not a surgical candidate they say) or epidural injection (not a candidate they say). Wish they could do something.
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dutchiris, i hope you recover from your surgery quickly & your pain is well managed & a good treatment plan organized for you.
I just got home from chemo a while ago, now having a cup of tea before going for a walk with Olive. Met a lovely early stage bc'er in the chemo room and we had a nice chat during my tx which was good and distracted me from the pain of icing my hands and feet.
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Candy- My scans showed my bone mets are stable. I'm hoping since they removed the ovaries that I can remain on Ibrance and Letrozole. I think I'll find out at my appointment on 4/15. I am no longer in the study however.
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Thank you all for the support and prayers.
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Dutchiris, I am so sorry about this. I hope you heal quickly and the pain subsides. Take care and go easy.
BevJen, back pain is the pits. Hope someone figures something out soon for you.
Wave hi to everyone and hoping the day had a few pleasant moments for everyone.
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Dutchiris, I’m so sorry you’re hurting. Can I ask how they found the cancer in your ovaries? I had a hysterectomy back in 2012 but kept my ovaries. Imjust curious. I hope you feel better soon.
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KBL - My left ovary appeared large on previous CT scans. On subsequent scans it began to appear more worrisome and appeared to be getting larger. I really had no symptoms.
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Thank you for answering. Mine are too small to see. They shrunk after my hysterectomy. I’m glad they caught it before you had symptoms.
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Dutchiris, I am sorry that you had mets on your ovaries, glad they did the hysterectomy and hoping the best going forward now that they are gone.
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candy: I am a cat person too. My DH and I often say "Aelfric is vigorously sleeping" That cartoon is true!
runor: Don't you want to scream "It is my uterus and I want it out! NOW!!" A month long wait for results is crazy stupid. I can hardly stand the week or less it takes to get the result of a scan. I thought the Women's Hospital was closed as part of some so-called restructuring. I could be wrong. I have gone to Mt St Joseph's, Royal Columbian, BCCA, VGH and Lion's Gate. VGH and BCCA are for my tests. I do my infusions at LGH. Much will depend on what they discover.
To my American sisters: When (and I do mean when) you get in to a Canadian hospital the care is excellent. Sadly, knees and hips are low on the list of priorities.
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Dutchiris, Wow, that's a lot going on. At least it's out, I guess. Be sure to be easy on yourself and give yourself plenty of time to heal from major surgery.
BevJen, so sorry you're in pain. Hopefully they can implement the treatment plan without delay.
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reporting for pocket duty this morning. Sitting with anyone waiting. Both shoulders are ready for leaning on. Treats in hand. Hot coco balls! & cookies.
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Mel, I will sit with you in the people's pockets as well, share in the treats and offer my support to everyone who needs it and there are too many here who are really needing it right now.
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Well, it is a damp rainy morning here. First walk, I could just feel the damp coolness in the air, that was around 7am. Second walk started out the same at around 8am then gently started raining. Though I got a little damp, still enjoyed the fresh air. Don't mind the sun not showing up as it makes walking far less sweaty. Only have one more walk to do to hit my minimum 10000 steps but am resting a bit and getting breakfast first, do the last one before 11am then just housework, surveys etc.
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chemo yesterday wiped me out. I got up to pee and crawled back into bed. Don't want to do anything. But I need to eat something so I can take my pain meds.
Bleh morning
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Booboo- How did your MO appt go?
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Well, my twin tub washer spinner broke down. That is two of those broken down in less than a few months. Disappointing to be sure. Still have my other broken washer which has a functional spin dryer and a Panda spin dryer so will use that for now with the bucket clip on washer as well. I won't replace anything else going forward. Will just handwash what I can, soak and if necessary, use the dryer at the apartment as well. Cannot keep putting money on stuff that will not work for a good chunk of time. At least the clip on washer is only 100 so it pays for itself in savings on laundry fees. I have a back up version of that as well in case it breaks but it is just the little workhorse so far.
If worst comes to worst, would hit up my older brother's laundry as I am sure he would let me do it there if I did not have the funds. I will have to see how much it would be to do my stuff at the apartment if necessary. Save up on a back up laundry spinner too.
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