Hi everyone,
Been hitting some major health roadbumps lately. As some of you kind people may remember, I'm in the middle of chemotherapy for 2nd time around for treatment of Non-Hodgins Lymphoma caused by my severe Sjogrens.
Things are not going so well for me with the effectiveness of the treatment. I had severe reactions to the first 4 months of chemotherapy and so the chemo was stopped for a month and a half to give me a break and then was restarted in the middle of January 2012 and is ongoing. Just was at the cancer clinic, and I'm down 8lbs since the end of February (am already very slender so don't have any weight to spare) and all of my B symptoms (those related to the lymphoma) returned early in March and are continuing.
Being sent for some additional CT scans to see what's happening, that is if they can determine that from a CT. A PET scan is very hard to get approval for where I live. My health seems so precarious these days and my other Sjs related issues are aggravated by the chemotherapy and so its like I'm in a constant bad flare.
My wonderful and caring husband took a year off from his job as of the first of January to just stay home and take care of me so I really shouldn't complain so much, but I am starting to get really concerned now about my longevity (I'm in my mid 40's) and I don't want to burden him further by laying this all on his shoulders as he is so very good to me.
Just needed to get this off my chest and I really could use a hug from the special people in this forum who understand what its like to wake up every day with this disease.
Daisy
****HUG!!!****
SENDING EVERY GOOD WISH to you....
Daisy, blessings to you and prayers for better health. What a wonderful husband you have. Please do not feel concerned that he is doing "too much" for you. That's what partner's are for. You would do the same for him, I'm sure and he knows that. I also have a wonderful husband, but his care for me is more doing chores that i can't do.
Please stay with us and post how you are doing. Lucy
Dear Daisy,
Your thoughts are always expressed so well when you post.
I am so sorry to hear that your treatment is not going well, and can imagine that you are indeed fearful about your long-term prognosis. I think that it is therapeutic and very brave to express that---for you and for others here, myself included, who may have to walk the path you are.
Your calm, deliberate manner have inspired me! I am not surprised that your husband is caring for you in the way that he is----you come across in your postings as a very special, precious person.
Although your worst fears may be realized, it is also possible that a different outcome will present itself. I think you will have to cling to that as long as you can, because it is possible.
Please know that I will be thinking of you, praying for you and your husband.
Daisy,
You are such an inspiration. I always look forward to using your posts. I am so sorry you have got such an unfair amount of challenges. Although we have never met, I feel you are someone I would love to be friends with.
Hugs, love, peace and prayers to you.
Jackie
Dearest Daisy,
Sending you love and hugs.
The disease sucks, but you are not the disease..........
I hope you can find something pleasant or funny to be part of your day.
Bless your husband, let him love and care for you.
And know we love you.
Hugs
Elaine
Dear Daisy,
I have been thinking about you and wondering how you have been doing. I am so sorry to hear of how rough things have been and was hoping to hear better news. I am so glad that you have such a loving and supportive husband. What an incredible blessing. I am praying for you, and truly hope that things will turn the corner shortly. Please do keep us posted.
Daisy,
Sometimes it's hard to understand why things happen the way they do----I will be praying for you. And a big hug.
Many hugs Daisy. I'm so sorry your lymphoma relapsed and seems difficult to treat with the Sjs. I truly hope your upcoming scans show at least partial response to the chemo treatments.
Remember everyday that lymphoma is a very treatable cancer and there are many different treatment options available if one doesn't work.
Best wishes to you and your husband.
Dearest precious Daisy,
I hope you can feel my arms wrapped around you tight. I am so sorry that this disease has dealt you such a blow.
It's spring time here on the Canadian prairies, and soon I'll be seeing the daisies in my garden. And it will remind me of you. Take care, friend.
Hugs and prayers for you, Daisy
Cheryl
{{HUGS}} for you. I pray things resolve soon! BTW - I did not know there was a connection between Sjogrens and Lymphoma. :-\
Praying for you Daisy. As Carolina said, let your husband love and care for you. I am sure he didn't make the decision to take a year off from work without much deliberation. He is now where he wants to be. Appreciate him, as I know you do, and count him among your blessings. Hope his comfort and care makes the difference in your journey.
Oh Daisy. I am sending you the warmest thoughts and gentlest hugs. You are such a sweet, caring spirit and I am so sorry you are struggling so much. I have been keeping you in my prayers and will continue to pray for a recovery for you.
lifted you inprayer.
so glad you have your hubby to take care of you.
((((((hugs)))))
lori
Daisy,
You are in my thoughts and prayers. I hope we can all be a source of love and support for you. You are such a brave, kind and special woman.
Sending a big hug your way.
Anna
Sending you a humongous hug - and healing vibes. I wish I could do more.
BIG BIG BIG HUGE HUG!!
For what it's worth, I just started a supplement a few weeks ago called Honokiol. I found a ton of research on it saying that many oncologists are now considering it or already including it as a supplement to standard cancer treatments - supposedly it helps make the cancerous cells more vulnerable to apoptosis (cell death).
I wouldn't take it without running it by your treatment team, but it's certainly worth bringing it up to your docs to see if they think it'd be worth a shot. Print out and bring the research and let them decide. Perhaps it could help your chemo work better this time around.
Here's the link to some research about Honokiol and cancer treatment:
http://www.ncbi.nlm.nih.gov/pubmed/22126780
http://cancerres.aacrjournals.org/content/67/10/4894.abstract
Feel better soon!!
Dearest Daisy,
I am new but have loved reading all the posts and you always seem to touch me. I am sending bright white lights to surround you, massive prayers and hugs. Just remember this... all you are dealing with is tough... it is nasty and mean... but you are tougher. You and your husband will get through these challenges and the champion you both are, will shine!
xoxo
Gayle
Hi Daisy: I am new and have really enjoyed the board and everyone's thoughtfulness to each other.
I am sending angels to surround you with peace and comfort and prayers also.
mylife--Katie
Sending hugs, prayers and healing thoughts your way. hang in there!
My dearest Daisy,
I've been "seeing" you online when I've been here at different times of the day/night these past few months and was hoping that this round of chemo was making a difference for you. I'm so sorry to hear about the roadbumps you are going through.
You are never far from my thoughts, especially when I'm here at the computer as "my daisy" is right here next to the computer. Like I told you way back when . . . this daisy at my computer, is for you. When I see "my daisy", I can't help but think of you.
When a married couple has been together for 21 years, like you and your husband, you have shared many things. The older vows at a wedding were, "in sickness and in health". I'm sure the two of you took those vows to heart. Your husband taking this year off work to help you on your journey to get well was done with his utmost love for you. It's a journey for both of you.
I found this saying in some papers of mine and wanted to tell you:
"Just knowing that someone is thinking of you and wishing you well can make you feel a little better, make your cares a little lighter, your heart a little happier, and your day a little brighter. I'm that someone. Get Well Soon"
"Wishing you brighter days ahead and hoping you'll soon feel well and strong."
Daisy - may knowing that others truly care for you and wish you the best as you are dealing with this health roadbump help in a small way.
Sending hugs and prayers,
Bucky
Our dear Daisy,
I'm sending you many soft hugs and hopes for better days. You are one of our dear angels here~your encouragement and support of all of us is always so appreciated.
We all need help from time to time, and I just hope that the love we can send by way of this forum to you gives you some comfort. Please keep us updated. I pray that the scans will show some improvement.
Remember that you are one of our most special friends and we send you blessings and hope. ;)
Melinda
Dear Daisy, you are in my thoughts and prayers and I'm trying to pray harder for your recuperation!
I am relieved that you have such a dedicated husband. Try to relax and let everyone else take on the stress. So many love you and are with you during this trying time. ((((((HUGSSSS your way))))))!
I often think of you Daisy cause you were so supportive of me when needed. I definitely have you in my prayers! Big Hug!!!!!!!!!!!
((((Daisy))))
Holding you in the light.
How wonderful it was to open this thread this morning and see all of the caring and generous responses! You have warmed my heart so very much with your kindness.
There is no doubt that there are alot of challenges in life, but as well, there are alot of blessings too. I counted my blessings this morning and all of you were among them.
with thanks,
Daisy
Hi Daisy :)
I've in on this really late. Been off visiting my daughter and haven't been online.
((((( hugs ))))) to add to everybody else's.
Take care - Scottie :)
I'm sorry you are going through such a trying time. I can't imagine your pain, frustration at the treatment and uncertainty. The only thing I can do is share a different side of it. I'm a very practical person, and since I'm not a doctor, magic wand waver or genie, sending you good thoughts and practical info are the only things I've got to give.
I need to explain some background first, so bear with me. My husband just went back to work after being at home for nearly 4 months. He was at home because he shattered a complete disc in his back. Two MRsI and two emergency surgies later they found that....Some of the pieces slid down and lodged in the spinal column where the spinal cord stops and the cord is replaced by a tangle of nerves that resemble a horse's tail. If he had shattered the disc above, he would have been paralyzed and unable to walk. He has caude equina syndrome. Very simply put, he is paralyzed from about mid gut to thighs (hence the term 'saddle anethesia') and has lost all function there. His doctors have hope that things will heal, but it will be a minimun of 10 months to a year before his functions will be even be a third of normal.
I can say with certainty that these has been the best months of my marriage. It beats hands down even the beginning of our relationship when everything was new and exciting. It hasn't been all great, though. There were dark times early on that he didn't know if he wanted to live. It is very humbling and even humiliating to be 38 yrs old or 93 yrs old and lose function of everything. Also, during this time, my health got worse, my parents had health issues and they needed our help and our children, at times, drove us nuts with some interesting behavioral issues. Just figuring out our new normal and learning how to communicate correctly took up a lot of physical, mental and emotional energy.
The point I want to make is this....Time together, even in the darkest of times, is an awesome gift. Most couples don't spend that kind of time together until retirement. I was able to see a side of my husband that I had only caught glimpses of during vacations. I had always thought out marriage was good as it was. I learned a few things about him that I wish would disappear, and I also learned new things about him that made me fall in love all the more. Instead of just saying our marriage vows, we learned how to live them. Doing that made sitting on the couch together and holding hands while watching bad daytime tv a fun date. We started sharing and experiencing every day things in a deeper way. The crazy thing is we didn't tour Italy to get closer, we were just two people in pjs feeling like crap but having a good time.
I understand that you feel like you are burdening him. My parents, my husband and I, we have all been in the 'needing help' position. We have all felt the guilt that comes with that position. It takes courage, respect and trust...courage to admit that you can't do it all or even a quarter of it and that you need help. Respect meaning that you openly talk how it makes you feel and then the other person explains how they view and feel about the situation. Then make a daily life chart listing every single daily chore. Write who does what next to each chore. Understand that in doing this, you may not be able to put your name by a lot of items. You may also see that some items aren't really that important. However, it is a honest black and white account that no one person is doing everything and that you are being helful. Then, the hard part...trust that you aren't being viewed as a burden. That last one is the hardest one for me. No matter how many times someone says "it's okay. I've got it. You just rest." you won't believe it until you stop seeing yourself that way.
While you give so much comfort to others, it takes great courage to say that you are having a bad mental day and you need a little help. Let us return all that you give so freely...Lean on us as much as you need....I can 'carry' you for a bit; I'm having a good muscle and joint day.
Persephone
Daisy
You are a very special lady and have a very special husband too. You are both in my thoughts and prayers.
Persephone, hugs to you and your beloved you. You sound an awesome team.
God bless
Kathyx
I think about you a lot, especially since I have swollen nodes in my neck now. You are so strong! I often feel bad for my husband too, but it can't be helped right now. Keep the faith!! Hugs!
Daisy
thinking of you and pray for your health to improve, your hubby is a star, you need support right now so dont feel bad.
I send my hugs and pray for you.
Take it easy
loulou
Daisy
I am so sorry you are feeling so poorly. I wish I could be there to give you a gentle hug.
Praying for you, harlin
I am sorry you are feeling so bad, sending gentle hugs to you!
A big big hug from me as well,hope things will improve for you soon xxx
Hugs to You and your Husband[/size
Please let your husband know we are here for him too.
Dear Daisy, You are a;ways in my Prayers, Hugs to you, mebog
Daisy, I will be sending up prayers for your health. You have struggled so these past several years. You are such a tough cookie and I am sure that you are getting weary of keeping a smile on your face.
Chronic illness is tough and you sure ended up with a slug of things to battle through. Will continue to keep you in my prayers. We all want you better so you can come back and post with us. Please know that we are thinking of you and your family. Please also, keep us posted. Irish ;D
Daisy,
I'm glad if all our responses were able to lift your spirits a bit. You certainly do that for all of us! :)
Hugs,
Melinda