My Husband, My Life, My Love, My Family, My Cancer
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See Q, in your pocket for surgery.
Mel, glad you were able to pick up your husband in such bad weather.
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In your pocket See Q I hope all goes well for you.
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Arrived for pocket duty, SeeQ. Rest easy, and know that you are covered by the love of your friends here.
Mel, good for you. Did you find getting out of the house a good thing? I am very isolated here but find that if I get out of the house periodically, it’s so good for my mental health. Love you girl!
I wanted to also say that I hope I’m not adding to anyone’s burden or trying to gain sympathy with writing about the end process. My motivation is to make it clear what the end looks like so we can each prepare in our own way. I am hoping to take some of the fear of dying away, or at least expose what it feels like so there is no mystery. Again, hoping this is helpful. I am not at all sad or upset…as a matter of fact, ever since the hospice folks have been here, I am more peaceful and am enjoying the little things (cooking). Anyway, just wanted to clarify that I am fine and hope that you are all okay too.
Emac, I am so in awe of you and others who are on the front line with caring for COVID patients. It’s the same here in FL. Hospitals have cancelled elective surgeries again, and there are no beds left. I will be praying for you for strength to get through each day. One at a time. One step at a time. Bless you for what you do to help others who are sick with this awful disease.
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Pocket duty for SeeQ.
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Laurie, Thank you for the information you have provided. It sounds like your hospice team has the right approach, taking things one step at a time and introducing more services when they are needed. Many people wait too long to enter hospice, and they do not get the full benefit of the services available. It is good to hear that you are still at peace. Your faith will help you through this. We are here to support you.
SeeQ, I am in your pocket today during surgery and in the coming days as you recover.
Candy, I am also with you as you have your PET scan. It should provide you with the additional information you need to decide on the future course of treatment. You have so much happening in your life right now. You must be physically and emotionally exhausted. As others have said, it is important for you to eat and sleep so you can maintain your strength. My prayers continue for you and your sister.
Hugs and prayers from, Lynne
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in your pocket seeq.
Mae it was good seeing you too. I’m going for booster today. The informative lady was right.
Boo I’m going to pm you thanks for sharing.
Mel that’s a lot of driving. Glad you got outWaving hello to everyone.
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Booboo we are so grateful to you for sharing your hospice experience. It’s the thing many of us are frightened of, including myself. All I needed to hear is that the aim is to make things calm, peaceful and with no drama and that can only happen if your team is aware of how things are for you and your wishes instead of firefighting when something suddenly goes wrong.
No one thinks in any way that your sharing is inappropriate. If they did they can decide not read your posts! I for one will be reading along and delighted you feel ok at the moment 💙.
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Booboo......I am also grateful you are sharing your experience in hospice. Thank you.
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Ready for pocket duty for anyone who needs it, just relaxing here getting ready for cataract surgery on Thursday, it will be nice to be able to see properly again.
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Booboo, I welcome anything you’re willing to share. I’m mostly accepting my fate but am curious too. Personally, I find knowing as much as possible provides a calmness about it.
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Booboo, I too appreciate your sharing details about hospice as well as on how you’re feeling. I think you’re very generous in thinking of us in our own times that are yet to come. 🌻🌻
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Thanks ago for pocket duty. Surgery went well, more involved than expected. Then, I napped at the hotel, went out for a bite ‐ and ice cream - time for bed again. Yes, Norman Center. I'll fill you in more later.
Candy - pocket duty for PET scan. Continuing prayers for you and your sister.
Booboo - you are being incredibly generous to share your personal experiences with us.
Mel - Hurray for a successful trip!
Kittykat - in your pocket for cataract surgery on Thursday
:: waving to all::
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Ladies~ I hope this finds you all content and relaxed. I'm trying to get to sleep.
I had a very romantic moment with my DH today. He was cleaning out somethings that he's been organizing and he brought over a bag to me. Not a fancy bag, just like a Walmart bag. Inside was my hair. My hair that I had lost my first time around when I had chemo cause me to loose it. When I finally cut it off. He waited till I left the. Bathroom and gathered every strand and saved it. Never said a word. I thought he was joking when I asked if he was serious and he was serious. He said. “I didn't know if I was going to loose you, I wanted everything I could get". I felt so loved at that moment. My eyes welled up and in that moment I loved him more. To think how much he was struggling and scared to loose me that he gathered up my hair to keep. I was just so touched by it and felt so loved. It struck me that a man would even think to do something like that. But a man who loves his wife would. I am a lucky woman. Even though sometimes he drives me crazy where my son is concerned. But he always means well. It was just an awakening type of moment like wow. This man really does love me. He's been there since the beginning as afraid and scared of losing us. Just like I've been all along. It's quite a love story. In my heart. Very full of thankfully having him as my partner. I feel thankful…..just wanted to share some goodness in light of all we suffer through.0 -
Oh Mel, I'm so happy for you! What an amazing gift! I hope you got some good sleep.
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I wanted to share a piece from The New Yorker on what it's like to be in the process of dying. A couple, both of whom work in palliative care, documented the death of one of the partners. There's a documentary and social media, but I preferred the article. I've wondered what this will be like, thank you booboo for sharing your hospice experience. Taking away the fear of the unknown is such a help. Love and hugs to you
https://www.newyorker.com/culture/the-new-yorker-documentary/what-is-it-like-to-be-dying
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Booboo....I will again express my gratitude for your willingness to share your hospice experience. I am very interested. I would like to add this thought, however. I want to tell you that if you ever decide to stop sharing it for whatever reason, please don't feel obligated. Make sure to take care of yourself. You will not have let us down.
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Ladies I go for my PET in a couple of hours. I actually want it to light up. If it shows progression in the liver AND bones then we would do systemic therapy-- probably switch to a PARP. If it shows all quiet but the liver then they will want to do Y90. I just don't think I can do a procedure right now. I am spending every day with my sister at the Nursing Home. She is anxious and wants me there. And she is getting weaker. May be a funeral in the near future. I just do not think I can be down with a procedure right now--- 2 days of outpatient procedure (mapping and then the actual procedure), and then a week of down time post procedure. And I don't think I can handle Y90 mentally right now. I need to be in a good place mentally to take on the procedure and I am not---my nerves are frayed.
I should hear the PET results hopefully this week or early next week--- I do not have an appointment with my MO. I guess she will call me.
This is all too much.
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Candy, I can empathize with the sadness and frayed nerves when it comes to your sister. I am thinking of both of you and agree you are doing the best thing for yourself being there with her rather than dealing with a procedure. I hope no matter what the PET shows, your medical staff would be understanding about everything you are dealing with and that you could take sometime to deal with your sister first. Sending any strength I have your way at this time.
Laurie, I do appreciate the updates you are giving us and it provides so much insight to me. I will miss you so much but am glad you are still here sharing and we love you for it.
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Booboo - thank you for sharing your experience with us. The hospice care you have going on sounds very similar to the care my mother received when she had stage IV lung cancer. All went well with her and it will go well for you too. Hugs.
Candy - hope all goes well with the PET scan. With everything going on, just take things a step at a time, if at all possible. Sending you prayers.
Mel - your DH sounds like a sweetheart!
This morning I sent my 2 boys off to school. First time they have physically been in school since March2020. Hope they stay healthy.
I have a PET scan on Saturday to see what's going on inside. Hope things are good.
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Candy - thinking of you today (and every day). I’m sure the stress of what you’re going through is really taking a toll. Take several moments during the day to close your eyes and breathe deeply. I know you know that you are not alone and that your Heavenly Father is with you. A deacon from our former parish finished every homily with “May the peace of Jesus Christ always disturb your life”. It is such a profound thought in many ways.
Mel - I think that is the sweetest thing I have ever heard. Made my eyes water. God bless you and your hubs
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oh Candy~ sending you love and thoughts. I’m so sorry you’re going through all of this. So so sorry . One hour at a time if need be. Only a phone call away if you want to talk. Or not. Whatever you may need.
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Mara and anyone interested, there’s an MBC survey about treatment during Covid paying $125 via Amazon gift code. It’s legit and only takes about 15 minutes (if you’re already signed up with MBC connect). I’ve already spent some, yay, I love free stuff
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Glad you got that gift card and survey, said I could not register as is US only but I am still happy to hear it for you Mae!
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Mel - what a sweet story! It's always nice to see they really care.
Candy - I refuse to hour for progression fur you. I do hope your team is listening to the distress you're in and can work with you on options, timing, etc. Can they start you on the PARP inhibitor short term to steak the y90 until your ready? And still keep it in your toolbox for later?
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Parathyroid story - skip if it's of no interest to you
History of elevated calcium repeatedly over one year period (>10, since I'm over 50) and elevated PTH and free ionized calcium on two monthly tests
Referral to endocrinologist, who diagnosed hyperparathyroidism based on lab work.
Endocrinologist ordered Sestamibi scan and U/S - both negative (common and doesn't change diagnosis)
Referral to surgeon / Telehealth surgical consult
Surgery - removed two parathyroid adenomas and part of my thymus gland, because it was within an adenoma. My dh says I'm always the special case - the surgery that usually takes 20 minutes took about an hour for me. Dh received text updates throughout the process.
Note: They say a healthy parathyroid gland is about the size of a grain of rice. The two that were removed were about the size of a raisin and a small grape.
I was pretty sore right after, but a day later it doesn't hurt too much and OTC painkillers have been sufficient. Little or no swelling. My throat hurts more from the intubation (also not usually required) than from the surgery.
I'll be taking a lot of calcium for awhile, and lab work follow up will be done locally.
Everyone there was extremely friendly, helpful, and professional.
We drove down the day before and drove home the day after. They have arrangements with local hotels for special rates/transportation.
Their website provides very detailed information, and they have an app that describes the whole process, from travel plans to discharge instructions (also provided on paper), FAQs, etc.
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SeeQ, I’m definitely interested and glad it wasn’t too horribly bad. Sorry you ended up having to be intubated. I have had multiple intubation but none worse than the first one where I ended up with a sore throat for three weeks. I hope you heal quickly and actually feel better now that you’ve had the surgery.
Mel, you do have a sweet husband. Extra hug for him tonight.
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SeeQ, I'm definitely interested and glad it wasn't too horribly bad. Sorry you ended up having to be intubated. I have had multiple intubations but none worse than the first one where I ended up with a sore throat for three weeks. I hope you heal quickly and actually feel better now that you've had the surgery.
Mel, you do have a sweet husband. Extra hug for him tonight.
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SeeQ, Glad you’re doing well after the parathyroid surgery! Thanks for the details for those of us who may be following you at some point. (No progress for me, endocrinologist is still not very concerned.)
Mel, What a beautiful story about your DH. I can understand how powerful that was for you. He’s definitely a good one, and so are you. 😊😊
Candy, Thinking of you. I hope your PET gives some usable info. Having frayed nerves with all you’re going through is not surprising but I still wish I could support you more. Wishing peace to you and your sister.
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Is it just me or are there more of you who feel your doc appointments are a waste of time. For the first time, my doc said she was running so far behind when she saw me, like she was asking me not to bother her today with my nonsense. I feel I've been steering my ship for a long time, and that really has been my choice. I guess she just relies on me now to just tell her what to order. I'm too far into this and don't really want to go somewhere else. Next month, unless I really feel I need something, I'm going to “try" to keep my mouth shut and let her do all the talking. I can never keep my mouth shut.
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KBL, you should never feel like your doc is implying don't bother me with your nonsense. It is not your fault she is busy and behind. You are important and if there are things about your condition that need discussing, she needs to listen. Maybe you are steering some of your ship but the doc is the one who says yes or no on what might work for treatments. You should also not feel like you can't really say anything outside of treatment. No matter how busy a doc is we need that social interaction as well. Maybe not more than a few minutes, but it needs to be there.
I tend to get verbal diarrhea myself as I get so excited to talk to another person since I live on my own. I've managed to reign it in quite a bit but it used to be an issue when I was first on my own after Mom died. I let myself go a couple of minutes with the social stuff and then let them get on to business.
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