My Husband, My Life, My Love, My Family, My Cancer
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Just popping in to say hello. Infusion one of Taxol was Thursday and I have been lying low ever since. Yesterday I think was the worst with bone pain and vomiting but I am feeling better today. I just feel out of it, like I can't keep a thought in my head. Following along with everyone but may not always comment. Hugs to all of you. So many of us are struggling right now.
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sondraf… Thank you. I do now remember she had an elderly mom that she was helping out, you are right. I hope that both her mom and Sadie are doing well even as they grieve this sad loss.
Oh Mara, please be careful!
emac877…I hope you feel better soon.
Mel….I don't remember seeing you post recently (I could have missed it), I hope you are doing okay.
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@emac877 I’m sorry you are struggling with the side effects from your Taxol infusion. Can you ask your Oncologist to prescribe an anti nausea med to stop the vomiting? My Onc prescribed them for me when I went thru chemo infusions in 2009 and also recently for the Verzenio Fasoldex, Xgeva treatment I’m on now. I no longer have the nausea and vomiting now so I never have to take the anti nausea pill. Hopefully you can get something to deal with the nausea.🤮💕
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Good morning all you sweet gals. Hope you are steady going and/or improving. In anyone's pocket that may need extra support.
Caught up on reading and it's always good to see so many come here sharing comfort and giving advice. Thank you all for understanding.
Yesterday the head tremors, and whole neuro symptoms were the worst. DH packed my bag to go to hospital, but I wanted to hold out till I saw the MO today. I took benadryl along with gabapentin 300. Got 4 hours sleep and so I took another benadryl. Got another 3 hours. I lost my sh*t when I rolled my walker in and the nurse asked how I was doing. I never, ever have broke down and cried like this before. I told her I was very ill and lost my quality of life. Going from chair, to bed, to porta potty most days. I told her about the disappointing neuro visit.
In the room comes by dear MO. He held my hand for a moment and said tell me all about it. He allowed me to receive one round of solumendrol and major dose pack of prednisone. He said this is MS. Even though it's been fairly dormant for years it has been pressed by the new drugs I am taking for b.c. He said the CT-scan showed two things. One, he was able to get a partial look at the dura lining and saw nothing suspicious. Two, he saw a new tumor in the spine area that was probably causing all the pain. And it burns and hurts alot. He said I'm not at high risk for lepto. I told him I'm suffering from mental burnout, especially with this MS attack and DH's diagnosis of Non-Hodgkin's Lymp. My husband has taken care of me (although I try to be independent as much as possible) since MS attack that left me bedridden in 2004. I rec'd chemo for MS and it restored most of my functions, over time. I am blessed.
The nurse infused avatastan (spelling)? and solumedrol and boy did it make a difference. I could converse without being overwhelmed. Tonight I'm burning a bit in the butt area. However, he said if I need solumedrol again, I'll need to go to the ER. So just one treatment. He ordered an MRI stat, and said may order spine MRI but wait and see? I told him the neuro visit was disappointing and gave him that doctors' card. I think he ordered RX for avatastan but can't remember. Sorry so long and this is what a great MO looks like. Dr. Madhu "U". At Florida Cancer Specialist Palm Coast, FL.
Laurel
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@illimae I think the thread could do with a Pup-date. How are your little guys doing? Photos! :)
@emac877 I wish you best of luck with the Taxol and that it can get your situation under control faster than say the Piqray. I know its tough to hear 'hang in there!' but I guess its all any of us can do - ride the waves of suck and hope to come out ok on the other side. Let's hope tomorrow is a better day for you.
Back on the Xeloda horse this morning - doing fine overall except for usual sore hip. I did two longish (well, for the current situation) walks yesterday and felt pretty good, even if things got a bit wobbly towards the end. Can recommend a weighted blanket for restless legs/restlessness, remembered I had one, dug it out of the closet and I went right to pretty deep sleep (at least for a few hours). Scan date booked for two weeks which is fine, really want to know what is up with my back/hip more than anything.
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@emac877
You are going through such a difficult battle right now and are doing an amazing job attacking the beast. I have one small tip to offer that helped me last year when skull radiation resulted in significant swelling, causing double vision, nausea and vertigo, as well as sleepless nights from the post-radiation cortisone treatment. Take a calendar and a bright colored marker. Mark the start and end dates of your treatment and then put a big x over every day you complete. It helped me to see the end date and the progress I was making toward it.
I think of you and send positive thoughts several times each day.
Love and hugs
Eleanora
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@irishlove
There have been times in my life that I felt as though I should change my name to "Job" and this seems like such a time for you. With everything you are carrying, it's incredible that it took this long for you to break down at the doctor's office. Happy to hear that you are being cared for by lovely, sympathetic professionals.
Clear dura and not high risk for lepto are both really positive news! Hope the spine met is in a location that can be easily radiated.
Don't know what the MO wants the MRI to cover, but do you know that you can insist that they divide the sessions? I was scheduled for a full spine MRI a few months ago, and was told I would be in the machine for 2.5 hours. I already have painful spine mets and couldn't possibly lay on that hard surface for so long. I refused to schedule until they offered 3 individual sessions.
Is it possible for you to get a second neurologist opinion? It doesn't seem as though that Dr is offering you as much help as you need.
Sending hugs and healing energy
Eleanora
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emac Hoping you feel better each passing day after treatment.
irish You are an amazing strong woman and we all have our breaking point. Glad to hear your MO was comforting and is taking control of your situation. Now I hope you get some relief from all the pain you have been enduring. Wrapping you in a giant hug.
mae Yes the freedom form not working any longer is one thing to celebrate!
mel Thinking of you hoping your mouth is doing ok this week Also hoping your one step closer to adopting Rain
I know I mentioned before but where has rk2020 been? Did I miss a post? Hope all is ok.
Big hello to all here, sending good vibes for a better day today.
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Asking for prayers.
DH and I were watching tv last night when DH stopped breathing. I called an ambulance. And I tried to get him to breath.
Fire Dept and ambulance arrived. They could not find a pulse. They gave him paddle shocks and meds. We all thought it was a heart attack, given his medical history.
ER worked on him for a couple of hours. They did get a pulse. Took him to catch lab. No new blockages or signs of a heart attack. Dr thinks he went into V-Tach. Did CT Scan, nothing nefarious showed
They moved him to ICU. Put him on a ventilator and sedation. And we can “see” him today.
Please pray for him (us).Thank you
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Dodgersgirl - Absolutely sending both you and your hubs all the best possible thoughts and vibes one can muster! Otherwise there are no words. I just hope for all the best here! You know you have so many supporters here too who will be thinking of you.
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Dodgersgirl-Prayers lifted for your and your husband.
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Dodgersgirl, I'm also sending you love and prayers for your dear husband.
Irish, what a wonderful MO you have, and I agree with what eleanora said, it is amazing that you hadn't broken down into a puddle long before. So glad you got some relief.
Emac, hoping today feels better for you.
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Good morning girls!
Dodgersgirl, sending many prayers for your DH and for you during this fearful time. May God hold you close and strengthen your DH as you go through this crisis.
emac, hoping your side effects from Taxol have diminished and you can enjoy today.
Laurel, happy you have a good MO and can hold you through your breakdowns. This is a real blessing! Praying for your many issues and that you can have a pain-free day.
Eleanora, you gave some great tips as always. I share your blessings of having raised my children and can now enjoy my grandkids.
Carol, glad to hear you got out for a good walk. it is a great accomplishment!
Goldensrbest, Hope you have something special planned for your 45th Anniversary. Celebrate in style!
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geez, what you all have been through Irish and Dodgersgirl, hoping the MS calms down and dodgers DH makes a full recovery.
Little pup-date that will hopefully make you smile. DH left him coffee cup on the bed and Pig stuck his whole head in there trying to get a taste, lol
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I’m catching up here after a couple of days.
Irish, I’m so glad your MO LISTENED to you! I hope this helps you start to feel better.
Dodgersgirl, I can’t even imagine. I will pray as will my DH.
Mae, thank you for the pup update.
Kids are coming down this week. Can’t wait.
I was able to sleep for almost four hours last night. Coughing seemed better, still having trouble eating. I ordered some single-serve portions of pasta from Amazon. Easy to fix (microwave) and easy to eat.
Love to all,
Carol
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Dodgers— Thinking of you right now. Hugs.
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I Read through everyone’s struggles. Dear @dodgersgirl I will have you and your husband in my prayers. I’m so sorry and pray you get answers today. Sweet @irishlove I’m so glad your team made you comfortable and taking care of you with answers to the pain.💗 @illimae I alway love puppy pictures😊 @sunshine99 Enjoy seeing the kids. It means so much when they come for visits. I hope your coughing and swallowing issues improve and you can enjoy eating soon.♥️. Also Hi to @goldensrbest , @eleanora . @sf-cakes , @intolight , @cookie54 , @emac877 @threetree .🩵💕
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Dodgersgirl: How frightening for you. Please post soon.
I had great plans of going further back then my last post and make notes. I used a little note pad and jotted down names and "issues". 10 pages later I was scratching out a response to X and making a new comment. It was crazy making so I won't try that again. I do read regularly and I am not good at posting.
I should know better. A few weeks ago a piece of paper fell out of a book I was putting away. I had been attempting the same thing. Make notes. Respond. I wanted to cry and scream. Pots, moth, marianelizabeth, leftfootforward. I remembered others Sandibeach57, LovefromPhilly —- so many more still in my heart and mind.
I am sad at the mounting losses of our dear sisters. Pat and her beloved Sadie. nopink and her painful honesty. Kittykat.
In spite of liver met DX I seldom go to that thread. So many vanish there and I never know. This is where I hang out.
People don't get it: those of us stable or even more blessed with NEAD are still not cured. We are not our old selves. Beating back this disease is beating us up. We aren't up to "doing stuff" all the time. It is also emotionally taxing to live blood test to blood test, scan to scan, infusions as regular as clock work.
Corduroymouse: Welcome. I love your name
I think mice are rather nice (poem)
It has been sunny for so long here, but not too hot or humid. Humidity does me in. I whine when it gets hot and humid. I miss the rain but when it rains here it usually doesn't let up for days on end and then I whine about the weather.
My tomatoes and green peppers are busting out. I had to put up extra stakes to support the peppers and more supposts for the tomatoes too.
And so much basil. I guess I will make some pesto.
More pet and animals pics please.
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Dodgersgirl, I am sending healing thoughts to your DH as well, very scary situation and we will await any updates that you have. We are all in your pocket and the pocket attached to his hospital gown.
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Thank you. Keep up the positive thoughts and prayers. DH is still in ICU. Hospital has him on ice to lower core body temperature, still on a ventilator, and heavily sedated. Next update from Dr is slated for tomorrow morning.
I canceled my MO appointment and chemo appointment for this week. Will see where we stand next week.
Being totally home bound and unable to “do” stairs is a scary place to be when all alone.
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Dodgersgirl
Positive healing thoughts bring sent your way. We are all here for you.
Sunshine99
Have a wonderful time with your kids. Spending time with them is better medicine than anything an MO can prescribe.
Elderberry
I know exactly what you mean about trying to keep everything and everyone sorted when responding to posts. I think of each of you every day. Whether or not I name you in my post, you are always in my heart.
Eleanora
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Dodgersgirl, Sending up prayers for your DH that he will turn a corner and improve. Also lifting you up in my prayers, for your fears for your DH and your homebound situation.
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Dodgersgirl: the "not knowing", the waiting……And the anxiety of that, being housebound, unable to do the stairs…How I wish we could help.
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@dodgersgirl . This is just so awful. Did the Dr. give you any idea what caused this? We are all here for you and I am praying fo you girl.🩵
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Dodgersgirl Healing prayers for DH and prayers for strength for God to carry you through. Hugs
One night I dreamed a dream.
As I was walking along the beach with my Lord.
Across the dark sky flashed scenes from my life.
For each scene, I noticed two sets of footprints in the sand,
One belonging to me and one to my Lord.After the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that at many times along the path of my life,
especially at the very lowest and saddest times,
there was only one set of footprints.This really troubled me, so I asked the Lord about it.
"Lord, you said once I decided to follow you,
You'd walk with me all the way.
But I noticed that during the saddest and most troublesome times of my life,
there was only one set of footprints.
I don't understand why, when I needed You the most, You would leave me."He whispered, "My precious child, I love you and will never leave you
Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you."3 -
Dodgersgirl - I can’t imagine anything more frightening. Please feel the love and comfort radiating to you from all of us. I pray for your husbands recovery. The waiting for news must be sheer torture. Oh how I wish we could all sit in this living room and hug you.
Cookie - I love that post. As I look back on my life there were many times that there was only one set of footprints.
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Hello everyone. I’ve been feeling a bit overwhelmed lately and when I finally try to get caught up on BCO, I just can’t find the energy to post. I know that sounds awful and I can’t believe I’m saying that out loud. I’m so sorry for not being more supportive. I think about everyone who is struggling…Irish, sunshine, dodgers and others who are just trying to get by day by day. I mourn Sadiesservant. I pray that everyone has good days ahead and comforting thoughts to help you sleep at night. You are my tribe so even if I’m not posting, you are never far from my thoughts. ❤️
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goldens- I feel the same way. When I look back at all I have gone through since the beginning I know I was carried through many times.
rk We all understand and are glad to see you! You don't sound awful at all, you are human and are going through difficult times. We all have been there many of days and we support you as we know you support us in thought. Yes we are a tribe and we all stick together on good days and bad. Hugs❌⭕️
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@shanagirl doctors don’t have an explanation yet just theories. They think something caused an electric overload in his heart (like v-tach) and heart didn’t know what to do so it shut down.
I “liked” each of your posts. Truly apptthe notes. I didn’t sleep last night. Feel like I am going to crash soon.
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rk, I feel guilty that I don't respond to each post like some do here. Some days it's all we can do just to read them, right? We all know that we care, even when we're quiet. Does that make sense?
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