My Husband, My Life, My Love, My Family, My Cancer
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Dodgersgirl, I am so sorry about DH as well, giving you support as you navigate these hard times. In your pocket still.
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Evening all you lovely ladies. Thinking and praying for each and everyone of you.
@keris113 We were diagnosed at the same time and honestly some days are better then others. I turn up the volume on a good old Bee Gees song and let it out. Of course the dogs bay along with me. In all seriousness it is one day at a time "sweet Jesus", one day at a time. That's the promise to keep my head above water. Talk it out, pray it out, cry it out and know you are greatly appreciated and we here at Mel's place will always be here to support you. You are so very young and have many years ahead of you. The new treatments in this era promise you a long tomorrow.
@dodgersgirl Oh my goodness I am so very sorry and upset for you and your sweet husband. I hope that the answer will be kindness and mercy for both of you. Is your decision on hospice based on your husband's outcome? Family members involved? Whatever your path may be, I will be sending all my love and support to you and your sweetheart.
@micmel Oh thrush is so hard to clear up. I'm sorry hope that magic mouthwash may help you as it did me. Hoping you heal and soon. Miss you dear one.
@emac877 What a difficult diagnosis but as mentioned illimae and others have dealt with brain mets for many years and quite successfully. The two new diagnosis I'm sure came as a shock but boy do you have a good team of doctors to get right at it. I am sending my love and prayers that they will radiate those little buggers to oblivion and you will be stable again sweet one. Bed covers are my favorite thing. I have a blanket that has been a favorite for years and when life gets me down, I cuddle under it, day or night. I hope you find comfort in whatever form works for you and we are here to pick up your spirits.
@shanagirl I'm trying to absorb your report and my brain, she are no good on all these steroids. I do know I have medistinal mets and I recall SusaninSF saying it's very common. It's hard to decipher those notes, but I also recall many saying some radiologists pick things up that others just overlooked. Plus they mention alot of inflammatory notes, so that's pretty common when your body is fighting illness. I had a pretty bad wheeze doing the breathing baseline test and the pulmonoligist gave me symbicort. Didn't realize how much of a difference it made until I utilized it. Perhaps that will help you, too. Maybe someone else can chime in that has a clear and level head at this moment. Thinking about you dear one and hoping you are stable with Mondays bone scan.
Well to the Amitiza miscoding worked out. Hurray. Now let's see what the $$ will be, otherwise it would be $350 for one month supply. I understand I got Dex??? IV this time versus solumedrol. It's working. My tremors are way down, brain pressure much better and urinating better and the Ativan worked last night. I slept 6 hours straight. A record. A little jittery today, but I started my first symbicort breathing inhaler, which I understand is a pretty good steroid. My gosh I can breathe better. Not mental enough to read up on my MRI and understand this skull lesion. Did absorb MS lesions, old news but active lesions are no fun. Gonna keep the 8 minute neuro until I can get an appt. in Jan. with a highly rated neuro that is local. I have to do an EEG soon. He never did get approval for an MRI, but I had one on emergency basis as outpatient.
Back to good old crappy insurance. I questioned the 30 day case worker why I was turned down for Kisquali. Hmmm, I could hear her dance around that question. Well soon I'll have my Pet scan and visit with MO and pray to start radiation. Can I pick and choose which buggers to zap? Got four boney ones, including that new finding in the base of the skull and one in base of spine. Hope Ibrance still working and these were just missed.
Hope that each of you have a quiet evening filled with peace.
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Irish, sounds like things are moving in the right direction, I happy you’re getting relief and good sleep.
Just finished a great dinner, now I’m enjoying red wine and dark chocolate on the deck. Bliss.
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shanagirl I wouldn't be over concerned with the mild increase that was seen before as it is not evident now. PET is very sensitive and some of the mild uptakes in activity are nothing especially if it's not there now. Some radiologists are very cautious and call every little thing they see even when it's borderline normal. I know it's really hard not to worry but if it was something concerning the radiologist would have recommended additional imaging.
dodgersgirl I'm sorry it's such a difficult time, continued prayers and hugs.
irish Glad things are improving for you.
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Dodgersgirl- I'm so sorry for the difficult times you and your husband are facing. I hope you have some kind of support with you in person. All of us are with you in spirit. My heart hurts for you.
Emac - what a cancer sh!tstorm you have going on! I'd want to hide under the covers, too. I hope the Piqray kicks butt on the lung mets and the radiation gets those buggers in the brain. Hanging out in your pocket with Double Dark Chocolate Milano cookies.
Mel - Ouch! I hope you can get that mouth/throat infection cleared up. What happened with Rain?
Illimae- red wine and dark chocolate is my favorite late night treat.
Keris113- you've gotten so much good advice. All I can really add is that I remind myself that "I'm okay until I'm not okay" I'm going to keep doing the things I want to do and living my life the way I want to live it until my body tells me otherwise. And...we all say don't consult Dr. Google, but I think we all do it. Just keep in mind that anything written before about 2015 - or even a little later - is ancient history. Since then, there have been - and continue to be - great strides in cancer treatment.
Dh and I went out today. He's getting around pretty well after his knee replacement. We had a nice lunch out, and stopped to get his new glasses fixed for the third time. Got my car washed and filled up, then went to the local meat market to pick up steaks on sale. Woohoo! Aren't we the adventurous ones?! We watched Bridge of Spies, again. I like line the Russian spy uses a couple of times when questioned about not seeming worrying or distressed about his dire circumstances. He says, "Would it help?" I try to keep it in mind and remind myself not expend too much energy on things that add no value.
Waving to everyone! Wishing you all the best possible day tomorrow.
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Emac
Please let us know when the radiation is scheduled. Still in your pocket hoping Seeq has lots of cookies 😋
Keris (and everyone else)
Cure-ious posted an article on the Clinical Trial thread on great news out of Wales where they have discovered killer T cells that attack multiple types of cancer.
Went to see "Barbie" yesterday and loved it. As a lifelong feminist I wasn't planning to go, but my feminist daughter highly recommended it and she was right! Laughed out loud multiple times. Can't wait to watch it again when it appears on one of the streaming services. Afterwards we went to a small outdoor restaurant next to a lake for dinner. It's my off week from Kisqali, so even got to have a glass of wine. It felt so normal.
Hope the weekend holds something good for each of you.
Hugs
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DH passed away last night. No more pain and suffering for him.
I landed in ER yesterday, later admitted due to blood clots while having bowel movements. A lot of bright red blood. And hemoglobin is almost at the blood transfusion level so that is being monitored, too
Heart is broken. Being in the same hospital enabled me to see DH and hold his hand as they removed the ventilator.
Thanks everyone for the continued virtual support
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Oh my dodgersgirl. I am so sorry for the loss of your DH. And now you in the hospital too!! My heart goes out to you.
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dodgersgirl - my heartfelt condolences for your loss, I’m so very sorry. And on top of that, you now dealing with acute medical issues. To end up in the hospital…when it rains it pours. Here for pocket duty as you deal with so many things. If only I could give you a real hug.
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Dodgersgirl, I am so sorry for your loss. I'm glad you got to hold his hand one final time. May God give you strength and healing as you navigate your own medical issues. Holding you in prayer.
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Dodgers~I have no words for how shitty that is. I’m so sorry for your loss. I am sending love and hugs. Geeze life is so hard sometimes. I wish words could heal.
Thank you ladies for your concern. It’s been pretty painful and I’m about sick of it. Yes it is hard to knock back. It won’t go away. So I’m the hamster on the wheel again. I am sorry for everyone who is struggling. Thanks for your concern Shana and others. Am on some strong medicine. Someone adopted rain before I got to get her. So im still looking. They make it difficult I’ll tell you that much. Hugs to all.2 -
Dodgersgirl, fuck! I’m so sorry. The cruelty of all of this at once is unimaginable. Wish we could be there but we are here for you.
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Dodgersgirl - Just so very sorry to read about your husband, but glad that you were able to be with him. Peace to you.
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@dodgersgirl, so sorry for your loss. May your husband rest in peace.😔
The Mods
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@dodgersgirl I am so sorry to hear about your husband passing away. My thoughts are with you and your family and friends. I am wrapping my arms around you as everyone here and IRL are as well. In your pocket forever.
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dodgersgirl My sincere condolences to you and your family, may he rest in peace. Glad you were able to be with him can't imagine your struggles right now. Prayers for strength for you as you battle through all of this. Love and hugs to you.❌⭕️
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@dodgersgirl OMG I am just so very saddened to hear of the passing of your beloved husband. I just can’t imagine going thru what you’ve just gone through during these past days. I am so sorry 😢.Now you are going through this terrible grief while being so sick in the hospital yourself. I want to talk with God in breath prayers during this day, @dodgersgirl . I will be in your pocket while you are there say prayers and giving you gentle hugs. My heart and soul are with you, girl.💯♥️😢
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Dodgersgirl, so sorry for the loss of your dear husband. Small mercies that you got to hold his hand. Prayers for you during this tough time. May God send you peace.
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Dear dodgersgirl
I am so very sorry for the loss of your husband, although no words are really adequate to express that. Glad you had the comfort of being with him at the end. In your pocket while find your way through this horrible mess that has been dumped on you.
Hugs
Eleanora
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Dodgersgirl - my heart breaks for you. I am so sorry you are dealing with all of this at once. I hope you are feeling the support from all of us here and have plenty of real life support surrounding you now. I have no words, just know you are in my prayers.
No major updates from me. I am in a better headspace with all of this. I have now spoken to two other members with LC (lymphangitic carcinomatosis) who are both living with this and keeping it managed. That has given me a renewed sense of hope. I have an appointment for the 10th to meet with the RO and go over the scan and the plans for SRS. It does appear I am doing weekly Taxol and the SRS together with the Piqray. It sounds like a lot but I'm taking it day by day and the more time I have to process it I am prepared for it. I have a strong faith in God, I have you all and I have a bunch of friends and family that have given me a ton of support and that has made the difference. I am fully confident that they can go in and radiate those little suckers right out of my brain and that that Taxol can beat back the LC to a manageable level. I have approval for the Piqray for three months so the initial plan of attack is in place.
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Good morning, all.
I’m still blown away at how good some of you are at responding to each post. Irish, you amaze me! It helps me if I start a Word document and then scroll through all the posts. Sometimes, if I’ve been away for more than a day, there’s a lot to catch up with.
Mae, I’d love to be enjoying red wine and dark chocolate with you. Since this is “mel’s living room” did you bring enough to share? Hahaha!
Emac, I’m praying for a peaceful day for you in the midst of this storm.
Keris113, I’m also praying for a peaceful day for you. Those days will come, and they will go. You won’t hear any platitudes here like, “You’ll be fine” or “Think positive” or any other unhelpful comments. Just know that we GET it, we’re here for you and for each other. Come here often. Mel’s living room is never closed (but when does she find time to clean it?)
Eleanora, glad to hear you liked the Barbie movie. I’m hearing good things about it. I was afraid it was going to be too much like “Housewives” or something like that. Not that I’ve ever watched any of those shows. Not my cup of tea.
Mel, I’m continuing to think of you and your mouth sores. WHY. CAN’T. THEY. FIX IT???
Dodgersgirl, I just read your post. My heart is breaking for you! I can’t imagine your pain. I’m thankful you were with him. I hope it helps just a little to know you are loved here. I’m so very sorry. I hope your own medical issues are resolved soon.
Waving “hi” to everyone I haven’t mentioned. You all are so very dear.
Carol
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Thank you all for your compassion and support.
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I am so very sorry, Dodgersgirl, to hear of your husband's passing and your own medical issues. What a terrible, terrible time for you. Please know how many of us care about you and are keeping you in our thoughts.
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Dodgersgirl, So sorry to hear the outcome for your husband. It was a blessing to be able to hold his hand. I hope your medical issues go well. As everyone has said, we're all here for you. Hugs.
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Dodgersgirl, we all love you, you are family here and we will think of you and your family as well during this difficult time as well.
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@dodgersgirl I am so terribly sorry for the loss of your sweet, loving husband. I hope that holding his hand and wishing him luck in the other land bought you some peace in knowing there's a new body and wholeness waiting on the other side. Please try to find strength in fighting your way back to all that love you, if you can. I pray there are many loved ones holding you close as you know we are. May you feel the love we are sending your way and prayers for healing.
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dodgersgirl: I am heart sick for you. How awful it must be to have your illness allow you a last moment together. May his spirit and soul fly free. I hope you can feel all the love here on this thread and may you find comfort, love and support in your family and friends during such a painful time
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Dodgersgirl- I am so sorry to hear of your news about your husband. Holding his hand was so important to both of you and I am glad you were with him at the end.
Hoping for a big turn around in managing your health issues too.
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Dodgersgirl, sending you love and support, I'm so sorry about the loss of your husband. I'm hoping you can also recover from whatever is going on right now keeping you in the hospital.
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Dodgersgirl so sad to hear of your husbands passing. I’m happy you were able to hold his hand and be with him. We’re all here with you as you go through this awful time.
Take care all
Pocket duty for whoever needs it with ice cream cones and sprinkles.
Tanya
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