My Husband, My Life, My Love, My Family, My Cancer
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shanagirl In your pocket for scans and prayers up for good results ❤️
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keris113: What you are feeling is absolutely normal. The rug has been pulled out from under your feet. It feels like a cosmic slap in the face. Nothing feels normal anymore. I paced around the house like a bear in a zoo. I was unable to just sit still. I had a MO I didn't like. I didn't settle down until I started treatment. I found a new MO and adore him.
Yes, my mortality feels more real than it did before DX. "We all die" but that was eventually, some time in the distant future. Not potentially so soon.
My GP prescribed anti-anxiety meds and they have helped. There is no shame or sign of weakness if you get meds for anxiety or sleep. The beginning is overwhelming but you will find that you will calm down. Ain't gonna lie that it happens overnight. I think it took at least a month before I found some calm and peace.
I was DX in March 2019 with mets to liver. The DX part of my profile disappeared after one of the changes to the BCO. I don't know how to put it back.
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mel: where are you? We are all here YOUR living room waiting for you!!
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Checked other threads.
MIA: karenfizedbo, Jackboo, Daywalker, Andi67, tina2
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I don't know why it didn't occur to me that I had a large dose of steroids with my first infusion. This is not my first rodeo with that but somehow it got shuffled to the back of my brain and now that it was brought to my attention this past week makes so much more sense. I am usually chill and a live and let live kind of person but I swear everyone is on my last nerve this week and I haven't slept and I am just feeling like I'm plugged in to a power cord and exhausted at the same time.
I showed up for my pre-Taxol appointment and the infusion got put on hold. I'm doing a stat brain MRI this afternoon after noting that my vision has been blurry since Tuesday and on exam I can't walk in a straight line. There would be no passing a sobriety test for me today. In any case, I will update as I know more. My breathing is better. I'm grateful for that and the PA for my MO's office noticed that also. It dawned on me I don't know when my chemo is tomorrow because I forgot to ask so I should check on that.
Also very worried about Mel.
Hugs to the group. I will go back and take notes and respond in a different post.
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From what I can tell from this "upgraded" site, Mel was online yesterday, she just did not post.
I hope she comments to us soon.
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I texted Mel.
She is ok. She has an infection in her throat and mouth. She is tired and in pain.
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Shanagirl
Fingers crossed and positive thoughts sent your way for great scan results today and Monday.
emac877
Hope the brain MRI goes well and discloses an easily fixable issue. After everything you've been through lately, I wouldn't be surprised that everyone was on your nerves even without steroids.
Candy-678
Thanks for the info on Mel. We can breathe a collective sigh of relief. Hope she trusts us to keep the living room in good order 🤭 Anyone know how to play virtual beer pong?
Hugs
Eleanora
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Keri - give it six months, give some time for your first treatment to bed in, give it to your first scans to see how things improve and how you feel better. Its amazing how that underlying pain and mental stress just saps energy and resilience right away. Slowly you will start to feel like yourself again and get hope and the sun will shine once more.
Had a long lunch with a friend today whose mother and father were in the same hospital I was stuck in; we had a good laugh about all the various ward personalities encountered and he understood where I was coming from. He also had a great recommendation for a new PT and a weight trainer for hubs, so that was very helpful. Got hubs all packed for his trip home tomorrow, and frankly am looking forward to a night and morning alone before my 74 year old tiny tornado of a mother shows up on Saturday afternoon. Hip is better every day and Ive taken a page out of Mara's book by doing some marching in place when waiting for the microwave or help relieve some pain.
Feel better Mel!
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emac, in your pocket for the MRI
Candy, I saw she was on BCO yesterday, thanks for the update.
Micmel, sorry that you’re unwell and in pain, I hate this for you, hugs.
Hi to all, nothing new here, just enjoying the peace and quiet at home.
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@keris113 I felt exactly that way when I was first diagnosed. Talking to friends, exercising, getting a treatment plan all helped. The palliative care doctor prescribed anti depressants and Ativan. I got a therapist. I started logging onto the zoom meetings from here. All those things helped a bunch! Getting going on what I needed to do helped me realize that I’m not dying right away.
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Mel - Best wishes and feel better soon!
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Hi everyone, good evening. I’m relieved to report I had good results on my PET/CT today. It cam back already on MYCHART. And I read the results. No Progression, lymph nodes and organs normal, nothing new or changed from last scan in April. I was quietly worried about lung Mets but they were clear. So my cough is most likely allergies or Vernezio SE. So, Monday I’m going for the Nuclear Bone scan.
@keris113 Your anxiety and depression is very normal and something everyone hear has gone thru and when it gets overwhelming this is the place to cry and talk about your feelings and get answers from those who are going thru it with you. I get very depressed and my feelings sometimes feel very Dark and negative in the week after I get my Faslodex and Xgeva monthly shots. I get down on myself also because I’m always so tired and isolate more than being social with friends and family. I’ve given into these feelings more this summer because it’s been so hot. Just try to realize what you are feeling is the result of the shocking diagnosis you were dealt, and the side effects of your meds, and the fact that you are so young and overwhelmed by the reality of this diagnosis on your life. I’ve had situations in my lifetime when I needed a therapist, and anxiety & antidepressants. These things did help so much during those times so don’t feel bad about reaching out to a therapist and asking anxiety meds. I do think that if you share thes feelings with your oncologist and his or her team, it will benefit you. Trust your team and know that they are treating you with the very best medication for YOUR specific cancer. These latest treatments are giving women many years of life. I know it’s hard to grasp that with stage IV but that’s where you put your trust in your team and I know from experience, your depression and anxiety will pass and you will figure out ways to enjoy the present. Stay in the present, don’t dwell on the past and don’t worry about the future, stay with the present and take one day at a time. Tomorrow is another day and things will feel a little better with each new day. And if another sad day pops up just remember it’s normal to feel this way and do something that gives you peace and calm. For me it’s walking my dogs 🐾on a cool evening and painting👩🎨🎨 during the day. Sending encouraging hugs to you💕(((((((💗)))))))
@threetree , @mara51506 , @intolight @cookie54 @elderberry @sondraf @eleanora @emac @irishlove @micmel and all I missed have a relaxing evening
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Shanagirl
Congratulations 🎉👏 on the great scan reports. Now you can exhale! Fingers still crossed for Monday's bone scan.
Sondraf
So glad to hear that you had a lovely lunch and some laughs with a friend. Bet that raised your spirits. Your description of your Mom made me realize that I am old enough to be yours! When my children lived at home they insisted that I didn't get out of bed each morning, but was launched 😂, so my empathy is with your Mom. We mean well, we truly do.
Keris113
I am so sorry I haven't responded to you yet. This thread moves very fast and Iust have missed your initial post. As others have said, what you're feeling is something we have all been through. I promise you will come out the other side. Think I read that you are on Kisqali. I will start my 13th cycle next week and it is still controlling the beast, so there is hope. Now that I know you are here with us, I will think positive thoughts for you as I do for all of my sisters every day.
Dodgersgirl
Still sending love and healing thoughts to you and your DH.
Hope everyone gets some sleep tonight.
Eleanora
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Mel - thinking of you and sending you virtual healing hugs.
Keris113 - This is a great group and I'm glad you found us. I think what you describe sounds perfectly normal. I personally have found my 3.5 years with this diagnosis to be more of a rotating seasons kind of thing. I have confident and happy times and I am also knocked over by unanticipated surprises. Finding a support network has been the life raft for me when I feel like I'm downing in it.
Dodgersgirl - you and DH still in my thoughts.
Shanagirl - Yay for stable PET scans 🤗❤️ We needed some good news.
I got the results of the MRI and got a call tonight. Unfortunately I have four newly identified spots in the brain. They are small, all less than 0.9 cm. But this likely represents brain mets. The PA called me personally to let me know he has already talked to the RO about this and showed him the scan. They want to do something called SRS which I guess is like laser beam surgery instead of just radiating them. I will know more tomorrow after the PA has a chance to go over it with my MO. Chemo is cancelled this week in any case. The big challenge for them is to manage my blood sugars on Piqray and the steroids so I am being started on Metformin and will be checking my blood sugars morning and night now. I was a little blown over by this. It's not what I expected but the way he described everything it sounded treatable and the RO wants to start treatment as soon as possible. Tonight I'm just going to take whatever I need to to knock myself out and sleep. I just need to bury under the blankets for a while. I'll be okay. I've seen Illimae and Mara manage brain mets like champions so I just need to disconnect so I can wake up ready in the morning for a new day.
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emac, I responded on the Brain Mets thread but will also add that your MO may want to take another look at your HER2 status since those with low HER2 (1 or 2+), previously considered negative, may benefit from Enheru. Just a thought.
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Emac, I'm praying that you are able to crawl under your blankets and sleep tonight. This is hard news, and I'm hopeful that the women here who've been living with brain mets for years can comfort and inspire you some.
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keris113, oh my , we would not be here without having experienced what you are going through right now, because of the expletive MBC. I agree with everyone who suggested anti anxiety meds, doing things you enjoy, planning for tomorrow -not too far ahead at the moment [ that will come in time], finding somewhere you can scream and shout or sit and sob, whatever works for you, dont go on dr google , listen to your medical team, just keep going as best you can for now. So sorry you have joined the club where nobody wants to be a member, but we are here for you and will do our best to encourage and support you.
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Oh emac - that on top of the lung stuff is not helpful at all. I dont blame you for wanting to burrow into the blankets. This is a lot coming at you all at the same time. Sooner or later you WILL get on the right treatment for everything and you know how much relief that will bring.
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emac Hope you were able to get some restful sleep which I'm sure your body can certainly use. Not the news we wanted to hear of course but I like the attitude of your team. Let's get right on it and get you back on the on winning side of this. Hugs.
shahagirl Congrats on stable, we celebrate every victory here! Treat yourself this weekend to something good. Sending positivity your way for good bone scan results also.🤞
mel Ugh so sorry to hear your struggling with your mouth again. We all miss you and crossing fingers for a speedy recovery.
sondraf Nothing like a good laugh with a friend! Glad to hear hip is improving and your mom is coming. Sounds like she will literally keep you hopping lol, enjoy.
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Shanagirl- Congrats on stable PET. Hoping good news continues with your next scan next week.
Emac- So sorry to hear of the new brain mets, after your recent struggle with the lungs. I wish I could give you a big dose of "strength" for what you are having to face.
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Mel, I am so sorry about the throat infection, wish your mouth would give you a break. In your pocket.
Shanagirl, in pockets for good scan results as well.
Keris, forgot to mention, make sure you frame your thoughts as living with cancer as you go through whatever treatment is given. It is much harder to deal with with the thought that you are dying of cancer. Makes everything else easier to deal with which is important.
Emac, I am sorry to hear confirmation of brain mets. I hope you got some good sleep and yes Mae and I are both long term brain met survivors.
Dodgersgirl, still in you and your DH pockets as well.
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I have not done much, doing laundry left over from yesterday, surveys etc for extra grocery money, not because I need it but I enjoy having it. Offsets the ridiculous inflated prices.
Not sure what I am going to do besides the usual, need to vacuum and dust as I find the cat fur drifting around is hard to keep up with, even with everyday vacuums. If it is not too hot, might walk up and down to various bus stops nearby, make sure I can do it. We will see.
Breakfast will be simple, chopped hotdog and a couple of eggs, cooked in sandwich maker on an english muffin, may do up some rice later on with the usual beans and cheese on top.
Hope for a good day for everyone.
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@emac877 — sorry to read about brain mets. Sounds like you are close to a plan of attack. Sending positive thoughts that it will be effective. Please keep us posted.
Also, be aware that Metformin can case diarrheaToday DH will undergo neurological testing. Expect to learn if there is brain activity or not. He is still in a coma. Going to be a hard day.
Thank you to everyone’s continuing support and concern. One day at a time. Thinking I may have to head to hospice.
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Mel - I’m guessing you probably have thrush. If it’s something else, so sorry that your mouth problems have been so persistent. Everyone here is so worried about you - we miss you!
Shana - love the good news❤️. Wish we heard more of it.
Emac - that had to have been a hard pill to swallow but your care team sounds like they are focused on your treatment which is a great thing. I’m praying SRS treatment works for you. Here for pocket duty!
Keris - I echo what’s already been said…..you’re new to this awful disease and your emotions are so normal. I think I remember reading that you were put on meds. Keep in mind, they take time to work but if you don’t feel any better in 3-4 weeks, you may need to try a different Rx. You came to the right place for support. Mel’s living room is filled with wonderful friends and we are always here for you.
Dodgersgirl - keeping you and hubs in prayer.
When I was working I always thought of Friday as the start of the weekend. I hope everyone’s weekend can come with peace and comfort.0 -
Dodgersgirl, Praying for you and your husband on this hard day. May the peace that passeth all understanding surround you.
Emac-So sorry to hear your news but glad there is a plan of attack.
Keris-I echo what others have said. Framing it as living with cancer really helps. I found the book "Cancer as a Turning Point" by Lawrence LaShan to be a useful tool in figuring out how I wanted to live after a cancer diagnosis.
Wishing a good day for all, no matter what you are going through.
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Thank you everyone for your support and encouragement. It really means a lot and I take it to heart and will certainly use some of your suggestions. Trying to occupy myself with things that I enjoy and take my mind off of things. It's not always easy. I am still working full time and that is an added stressor right now, and I feel like I don't have a lot of options as far as reducing work and feel that I should wait to do so as well if/when things progress. (I am 37 and single). Just a lot to think about all at once. I feel like there is no more room in my brain and the thoughts are going to spill out my ears pretty soon.
I have scans coming in early September to see how the Kisqali is working, so fingers crossed that it is doing its job. 🤞
Thinking of all of you that are going through tough stuff and just navigating through this along with regular life things. I will keep checking in and try to post more as well ☺️
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Emac - I am so very sorry to hear about this latest development for you; just as I was about the lung progression. Being buried under the covers can be a real good retreat sometimes, and about the only thing one can do. It does sound like you have options and that it just might be a matter of time until you can get this under control, but things will smooth out for you here before too long, I'm sure. This is just one of those times when I all I can say or think is NOT FAIR!
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Popping in this a.m. to see upsetting news
emac: Brain mets must be a terrifying thing to have diagnosed. mara and illimae have been plugging along for some time so I hope that gives you comfort and hope.
dodgersgirl: I have been afraid for you and your DH. Such unsettling times and hard decisions to be made. There are no words …………….
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Hey all thanks so much for your encouraging happy words about my scans when I mentioned they were clear. So After I got home I kept reading them and researching terms that were in the report, going back and forth between past scan reports. I really drive myself nuts with trying to interpret every single thing. And I went to bed last night feeling so stressed and worried from all the questions going on in my brain now. I need some input guys. I’ve been so worried for several months over my mediastum. It’s always mentioned in all my scans. I’m freaking myself out now because I’m thinking I missed something and my scan is not so positive after all🙁 Here is yesterday’s PET/CT and below that are previous ones going back to my original Jan of this year.
AUG 3
Mediastinum: Mild increased activity within the subcarinal space and symmetrically within the pulmonary hila on prior study less evident at this time. ET demonstrate small cyst subcentimeter mediastinal lymph nodes which are not pathologic by size criteria. Cardiac size is at the upper limits of normal.
APR 24 PET/CT SKULL BASE TO MID THIGH Patchy bilateral airspace opacities as seen on the most recent CT chest likely infectious/inflammatory.
2. Uptake in bilateral hilar lymph nodes, nonspecific, and possibly reactive in the setting of pulmonary disease. Continued attention to these areas on follow-up imaging is advised
APR 17PET/CT CHEST & ABDOMEN PELVIS WITH CONTRAST Mildly enlarged mediastinal and hilar nodes are mildly increased in size from prior CT exam. New patchy nodular alveolar opacities, most prominent at the periphery of the left lower lobe. Findings are suggestive of infectious/inflammatory etiology. Follow-up to resolution is recommended.
JAN 18NM BONE SCAN New region of punctate increased uptake at the lateral border of the mid body of the sternum on the left seen on the anterior view may represent an additional metastasis.
My DH thinks I’m worrying too much about mediastinal cyst/tumor in the area around my trachea, lung, and heart and all the other terms I’ve looked up. I’ve had a nighttime cough and sensitive trachea when I yawn, I’ll have to wait for my NM Bone scan on Monday before I talk with my Oncologist. Does anyone else do this to themselves?😩
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