My Husband, My Life, My Love, My Family, My Cancer
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Stopping by the living room to say hello. Philly, Lynne, others getting discouraging news...sending hugs to you!
Scans for me this past Monday. My MO sent me the results within a few hours...still stable. I'd been concerned about a PITA (lower back) that's been constant for two months. She thinks it could be a compression "thing". To be expected after 52 months and extensive bone mets. So...back on Tramadol for pain and back to Chicago for a pelvic MRI in a week or so. I've planned to have lunch with my DD1 after the test so there's something to look forward to!
I'm noticing the trees beginning to bud out and get some color. I bought my first seed packets yesterday for planting inside. Spring is almost here in the Midwest.
Hope you all enjoy the coming weekend!
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Is it just me or does something about this winter make it seem like just the longest, darkest, wettest thing ever? It was another cold, windy and rainy day here today and its been weeks of this - just depressing. On top of all the virus hysteria it really doesn't help.
An American friend came over for lunch today and made a very strange soup that was actually really good (kale, can of chickpeas, can of black eyed peas, pre-cooked meatballs, chili flakes, vegetable broth, and honey greek yoghurt. Im not kidding about that last ingredient). I hadn't seen her since last August for various reasons, and we have known each other for oh, probably 15 years now, even though we have only both lived in London for the last 7. She is a bit older than me and talks about a mile a minute, but having someone to talk to in my own 'language', who knows my background and I know hers, with similar experiences and expat challenges, it was the best tonic possible.
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Iwrite- Woohoo!!!!! You go girl !!!!!!! 52 months, wow.
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Sondra --
Oh no! I'm heading to London on Monday night! Shoo that bad weather away!
Scan report: had my MRI of my liver/abdomen today for meeting with my interventional radiologist. He says all looks stable with perhaps some slight decline in the size of two lesions. I had wanted him to go back in and take out another spot, but he is reluctant to do so -- says the cost/benefit analysis says leave well enough alone. So that's what we will do. He was not worried about the slight fluctuation in my tumor markers at this point in time. So it's good news that all seems stable. This also agrees with my recent CT.
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yay bevjen and Iwrite!!!!! Yayayayayyy for great scan news!!!!! 🍾🎉💫💗🎈🎉🍾💫💗🦄
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Congrats on stable Iwrite and Bevjen 🎉
Not much to report here but my voice sounded mildly improved this morning, so maybe the healing is starting.
Thinking of you all and the challenges we face 🙂
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Good to hear from you Mae. Hope improvements continue albeit slowly. You’re probably now very pissed off!
Bev Jen enjoy your trip... and possibly don’t watch the news too much... it’s a bit overkill right now. Even my DH now saying we should almost lock down.... in Scotland? He’s worried about me bless him, but I will risk assess and take sensible precautions. I will not allow imprisonment. Apart from anything else.... we live in a beautiful country where space and airis a plenty...London is tighter and you will want to be very sensible though.
Sondra agree we have had a horrible wet and windy winter... we call it dreich...for those not in the know pronounced dree..with the same guttural sound as Loch at the end!
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Karen,
The news in the UK can't be any worse than the news in the US. EVERYTHING is coronavirus, all the time. At my treating hospital (Hopkins) it appears that people are stealing the masks that are in the cancer center. It's crazy.
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Aww Bev Jen. Completely understand...All I can say is FFS and switch it off... you already know how to look after yourself. That might be our superpower in all of this
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BevJen and lwrite, so happy to hear about stable scans.
Mae, glad to hear there is improvement, even though slow.
I am tired of hearing about covid19. Follow the same rules we follow as cancer patients. If on a systemic chemo, stay out of crowds etc, wear a mask if you have a cold. Wash hands after being out, use hand sanitizer if cannot wash hands. Don't panic.
I set my goal of walking 10 km to the mall. It involved lots of stops to rest, drinking water and a bit of chocolate. I also ate another meal before walking home. I am pleased to say I did it. Had very sore feet. The whole way there, I was saying I can do this, I can do this. I did not think I could as 8 km was HARD. My feet got sore about 20 mins from home. When that happened, the I can do this was replaced by saying my feet don't hurt over and over. It must have taken my mind off the pain because they actually stopped hurting. Will have to get softer insoles for long distance walking.
I like setting and making my goals. Not sure what the next one should be.
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Hello Team! I am in full mode bloodwork and scanning. Got results of tumor markers. They went down almost two points. But are lower than last reading in august. Usually the scan follows the tumor markers. So I'm hopeful to go onto number 42 this. Coming week. Ibrance do it's job.
Mae~ love hearing improved mentions.
Mara~ you're an inspiration also! I enjoy your take on a lot of things.
Moomala~ you doing ok.? Dodgersgirl,? Lynnwood? Chicagoan.?
Philly~ I'm hoping you get to stay the course as well. I hate when conflicting things occur. Maybe you have lazy cancer. I've been told that's what mine is.
Candy~Hi there lovely lady, Sending a hello.
MJH~ thinking of you.
Jen~ hello to you. BevJen hello to you as well! Hope all is good.congrats to you too !🎈🌹💕🎆🎊
I write~ congratulations my sweet friend 🥳🥰😎🌻🌹🎈🎆
Karen ~ waving hello to you as well
Sondra~🌹🌹🌹
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BevJen- Yay !!!!! Stable is what we want to hear!!!!
Mae- Slow improvement----good for you. Hope upward movement from now on.
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Moth we all have a cancer calendar. Yours is pretty full right now but hopefully once you start treatment it will become more routine and not so often. Happy about your vein nurse. That’s amazing bc sometimes they think they know it all. Glad you’re done for the day. Now just waiting for results together.
Mel I hope your scan day was easy too
Tanya
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BevJen and iwrite great news and buckets of happy sighs of relief sent your way.
Tany
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Thanks, Tanya.
It just brings home to me, though, how we live from checkup to checkup, scan to scan. It's a helluva way to live.
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Tanya~Hello lovely. Good too see you. Hugs to you!
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Micmel— waving to you. Still in your pocket for your scans.
Ihad blood work today, followed by a call from MO’s office that numbers are good and I am clear to start cycle 2 of Ibrance.
RO visit today, too. Have been cleared to only return if MO or I feel the need to have more rads. RO did say it could be 4-8 months to fully recover from diarrhea caused by rads.
Orthopedic surgeon visit yesterday said he didn’t see any danger of hip fractures from acetabulum mets. I have another follow up with him after next scans.
Next appointment for me is mammogram in a couple of weeks.
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Hi, I’m back. This trial drug combo is really knocking me down. My onc was quite concerned about the weight I have lost due to diarrhea, nausea, vomiting, and not being able to eat and drink enough. So I got another round of IV fluids and am off the horrid drug for a few days. Then they will check me out, maybe give me more fluids, and I will try to restart with a different diarrhea med and more consistent antiemetics. I’m like, wait, wait! This isn’t me. I’m the one who handles all treatments and carries on! I can fool everyone. Who me? No, I’m not a cancer patient. You got the wrong lady! I have been missing too many dance classes. I figured this disease would someday take my dance away from me, but I did not expect it to be like this where sometimes I can and sometimes I can’t. The other things I love are making my home beautiful and nurturing, and creating a beautiful garden. Soooo, some good friends came over and helped us make a nice long, deep, flower bed where I can play! Just a couple things left to do, and then I can plant to my heart’s content.
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ShetlandPony— so sorry you have to endure all those SEs.
I had Rads to my hips that had to pass thru a portion of my bowels that left me with really bad diarrhea that led to severe dehydration and a week in the hospital where I was getting fluids via an IV 24/7. MO talked about having to put me on an IV for nutrition, too, but fortunately, didn’t have to take that step. My MO team found an older prescribed cholesterol med that wasn’t given much any more due to constipation. The team said this drug was being repurposed to treat diarrhea from rads it chemo. I took it for a week and went from 30 trips a day to the bathroom to 3 trips a day. Drug is Welchol. Maybe it could help in your situation??
If you search BCO, you will see others have found relief from diarrhea, too
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Good luck today Mel - get up and get in that tube and itll all be over quick!
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Sondra~thank you so much for remembering, I’m all done and home. Drowning myself in coffee. How that one thing can really mess up the start of our day.
Shetland~I’m sorry honey you’re having a tough go of this. I hate cancer so much, there are no words to even express the nasty things I could say. You’re in my heart, friend. Sister.
Philly~tyvm for the text and remembering me. I was sitting in the room when my Phone went off. I enjoyed our talk. Have a blast in Jamaica. So jealous. Steal some sunshine in your pocket for. Me!
It felt good to have pocketteers in my pocket a low rumbling reassurance noise with me. God I hate these days. Dodgersgirl. TYVM. You’re all wonderful. And tough as nails.
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to all of you! Shetland Post garden pictures!0 -
Shetland, I am really, really sorry this is so bad for you. Last thing you need is vital strength taken away due to diarrhea and illness. Hugs going out to you and sending my strength your way.
Mel, glad you are back from your scan. Another test over and hopefully good news to get rid of anxiety, at least until next scan.
When people on our site are so ill from new drugs they have to be put on, it reminds me of why I am so drug resistant. In my case, currently my doctors (and some family) want me to increase or change seizure meds due to a total of 3 issues in 3 months. Rest of the time, I was fine. The SE would make me weak. I refuse to add anything that will take my strength away. I will take my chances. I cannot even take a B12 supplement without feeling lightheaded and faint.
I did get up this morning expecting feet and muscles to be super sore today from the walk but they were OK. Decided to go get some gift cards I need. The walk is not nearly so long. Wee bit of snow here but not much, seems to be melting as it hits the ground from the warmth we have had.
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a few days ago I wrote "If I had progression in the past 3 weeks I think I will fall on the floor and not get up."
I have progressed. Lung is same, brain still neg but liver tumors have grown in size and number.
I'm running an almost permanent low grade fever now and feeling quite tired and drained with alternating sweats and chills. Spoke to MO and she's concerned about waiting what is slated to be another almost 2 weeks for trial treatment to begin. If my symptoms continue to get worse, she's considering dropping the trial idea and admitting me to hospital because inpatient I could start chemo quickly, whereas outpatient would also probably be close to 2 weeks. Or maybe starting me in an oral chemo. It is all very upsetting. This thing is growing so fast
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Hello ladies.
I went and did the church secretary volunteer thing this morning and ran some errands after. Now home and not much planned for the weekend.
I read all your posts and ache for the troubles that Mae and Shetland are having to endure. God bless you both.
I am thankful that Ibrance/Letrozole is relatively easy--joint aches, fatigue, and hot flashes--and that I am stable. But I also cannot help thinking that my turn for the troubles is coming. I think I posted on here (cannot scroll back or will lose my place) that on Wednesday morning I spent the morning on the phone with my insurance company. Just thinking/planning for the future (progression) and thinking about clinical trials and more specialized care at a larger cancer facility. The cancer facility is 2 hours away. A new satellite location opened 1 hour from my house, but the insurance says the docs are not contracted with my plan. So I would have no choice but go to the facility 2 hours away. I have been thinking, as I read your posts, that when I get worse, have nausea/vomiting and really feeling cruddy, I have no one to take me to my appointments to the facility 2 hours away. I go to all my appointments locally by myself. No biggie. But if I am really having a hard time with the treatment, I would have to drive 2 hours one way and fight the traffic.
So, I think, what do I do. Stay with local onc at rural facility with no clinical trials or specialized treatments. Or when have progression and need more specialized care, travel 2 hours one way, driving it by myself.
Then I start getting scared and depressed.
I know you don't have the answer for me. I just needed to vent. I wish I had a husband or a grown child that could help me as I get worse. But I never married or had children. And my siblings don't seem to want to help. Sigh....
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moth- I am so sorry. God help you. I wish we could talk in person. I would give you a hug. DAMN THIS CANCER.
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thank you, candy. I'll take a virtual hug
You're amazing to drive yourself. I went myself to radiation but everything else someone came with me. You're right to think about this for future as many of the iv chemo requires pre treatment with meds which can make you sleepy. Is there a volunteer driver program for cancer pts in your area? We have one here. They're busy but they are avail. And I guess there's always taxi or uber?
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Moth, I’m sorry to read about your liver and hope that those mets get lazy and allow you the time to get into the trial.
Candy, it’s tough do go through this on your own, I wish you had someone to rely on in times of need.
I’m ok, still battling the throat issues but managing to stay hydrated and fed. I have lost 30 lbs but I’m beginning to introduce some solid foods a pill sized bite at a time. I’m sure I can avoid a feeding tube at this point, so that’s a a relief.
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Candy I think the American cancer society has volunteer drivers for if we’re sick and can’t drive
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Moth sorry to hear about your progression. That’s scary as heck. Keep us all in your pocket while you go through this.
Mae that’s a lot of weight. I assume you’re taking vitamins. Take care and I hope you’re back to eating good food soon.
shetland that trial sounds brutal. I hope it’s working and I’m glad they’re giving you breaks.
Mel enjoy your coffee and you’re done. It’s been 6 months in between scans right?
Tanya
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