Hi,
It seems people are a little quiet here the last few days--
Hope everyone is o.k., and I'm especially hoping CC is doing o.k.


I'm having "mental" issues, myself.... a bit of a depression has set in after treatment, but from what I hear, that's common. I'm trying a lighter dose of an antidepressant I was prescribed, a few month's back. Maybe by taking it in the afternoon and lessening the dose some, it will help. My chemo nurse suggested trying that, so "we'll see." I figure it can't hurt at this point.

I'm axiously awaiting for my Pet/Ct scan set-up in early December.
Like Linda said, "You won't be happy until you know you're well...."
She couldn't have said anything truer.
So, in the meantime, I just have to forge ahead...focus on the positive....
stay in faith....

I'd love to hear from you, CC...
If you're up to it & want some "company"....:)
love, S.

Hi Singer,

It is awfully quiet on the board and I too am concerned for CC. We never really did find out about the results just know that they wern't what was hoped for.

I'm sorry you are struggling with the depression. I hope that is gets better for you!

Take care of yourself!

Deb

Hi Deb,
Good. I'm glad to hear from you. It HAS been especially quiet here, hasn't it?

Hopefully, CC will come back to the Board. She mentioned she was depressed, too.
I certainly can relate--and my prognosis has been 'good.'

I just got off the phone with my chemo nurse a little bit ago, and she was telling me that chemo (and radiation) can definitely throw your brain chemistry off...so, in a way, that was a relief. I already knew that (to a degree)...but, it's always more comforting to hear it from a professional that knows your history & has your chart right in front of them.

Hopefully, we'll hear some good news from CC.
XO

Of course I want company Singer.:D I'm sorry I haven't been on but I'm just so depressed about the turn of events. I was hoping I'd be almost finished with this but no way. I have 42% bone marrow involvement and it's classed as stage 4. So now my onc said we have to be more aggressive in treating this. But there's only a 10-20% chance I'll be cured. So it's the pits. :( I've had blood work and I'm ready to start RICE chemotherapy. But with this one I have to stay in the hospital a day or two because one of the drugs take 24 hrs. Then on days 7-14 I have to have injections of G-CSF and that completes one. My doc said he's trying 3 of these to see what happens. If this doesn't work it looks like a bone marrow transplant. I'm so scared of this and that's why I haven't said anything because Linda hasn't posted and I'm afraid of the worse. Linda if you're reading this please let Don know that he has a perfect stranger praying really hard for him. :angel:

Singer I'm so sorry about the depression. I'm guessing it's sort of anti-climatic isn't it? I was talking to a lady at the chemo center today who had a relapse of the DLBC lymphoma like I have. She said that when it was all over she didn't know whether to laugh or cry. She just didn't know what to do. Everyday was consumed with the "c" and now all of a sudden, nothing. But of course she moved on and it's only been 3 months and she's back again. When she told me this I busted out crying. I don't even know her but I couldn't stop. The chemo nurse came to my rescue, again, and took me aside and said "Kayla, you'll be okay".

You'll get through this Singer. Gosh look how far you've come. I'm sure you're just anxious about the PET/CT scan and until you get the all clear, it will be on your mind. Just hang in there and keep reading those inspirational stories.

Hi Deb. Nice to see you here. How's things going for you? And Alison if you're still here, I hope all is well with you and your DH. :)

It's been a long day and my head is splitting from crying. I went to my mom's grave and had another one of our chats. I need her now more than ever but she's gone and I have to fight this alone. :(

Hugs,

CC,

My dear, I am so sorry. This has been so rough on you and now this. You seem so calm. Prior to any chemo what was the bone marrow involcement percentage?

I will pray so very hard for you. I wish I could give you a big fat hug right now!

Deb :(

CC,
Oh goodness.
I so badly wish I could be with you.
I've been on many other websites (even though I say I won't) with people that have had bone marrow involvement, and they were there to talk about it! --As in "past tense."
Many, many success stories are out there! You can do this!

This has all been so very hard on you.
I think it's especially hard, being as young as you are & not having family support, but I thank God for your special chemo nurse's. I love mine, too.

You're such a sweetheart to be concerned about me. I'll be fine. (I'm my own worst enemy, as you probably already have figured out)
Thank you.

I certainly pray you'll be healed & ask God to give you strength.
You're showing amazing courage. I so admire you for that.

I feel pretty helpless right now---I wish there was more I could do.
Please know that you have many friends here that care about you & you're always on my "special" prayer list. :angel:

I hope it helps you to talk here.
Love, S.

It does help to talk about it Singer. But I don't know why I shy ed away. I know I'm so worried about Don and Linda for what they're going through. And what is more worrisome is that Linda is talking to us. And there are a lot of new people here and I certainly don't want to scare them.

You had me scared there Singer when you said "past tense". At first I thought he meant they didn't make it. I'm not saying that I'm dying or anything so please don't think that. I'm just saying that it looks like I can't be cured, I can only hope for remission. Yes, Singer my faith is strong and I've been spending a lot of time there just talking to people and gaining strength from them. :angel:

I wish I could say I was calm Deb. Truthfully, I'm scared to death. I'm afraid of the chemo and I'm afraid of what the outcome will be. But I'm trying to stay positive. Don is my inspiration. :angel: I'm not sure Deb but I think I had around 15% bone marrow involvement before chemo. My onc was pretty sure that I had a good chance. But with all the setbacks and delays things didn't work out as planned.

Thank you both for being here for me. I'll be fine and Singer keep your chin up friend. You're almost there. :D

CC, I am so sorry to hear about the latest news. I do hope this chemo plan works. I also have bone marrow involvement but I think mine was 10%. My onc was a bit vague about it and the report was not easy to read. Mine cannot be cured but that does not worry me too much...it is just a reality! As long as I feel well, and I do, I am just taking it one day at a time. You have had it really rough. Let us hope and pray for better times for you.

Love to everyone.

CC,
Goodness, I guess I didn't word my post right.
I meant many cancer survivors have talked about having bone marrow involvement in past tense, as it was in "the past" and now they're better. Sorry..I didn't mean to scare you ..I think I'm a bit foggy today.

You know, I don't know whether I read this, or not, but I don't think they even use the term "cured" as much as they used to, concerning lymphoma. I think the term "remission" is becoming the mainstream term for "being well." I think it was from a website I was on. I'll have to ask my onc about that.

CC, I just wish I was with you to give you a big ole' bear hug, for the positivity you give to me! I think you're going to be just fine. As Linda always says, this is "just another bump in the road." I know...you're probably getting pretty darn tired of those bumps, aren't you?
Keep your sights on the "end of the rainbow."
Alison, you're quite an inspiration, too.
God bless you all,
S.

Dear CC, You poor dear. I am so sorry but I knew that was probably what was going on. I don't know if you meant it was worrisome I was posting or it was because I did not post. Either way don't fret about me. Don is still in the induced coma and is bleeding more but nothing is changing so far. I do not know how he is still alive. I guess a part of me died last Monday when they put him on the respirator. If he does survive this it will truly be a miracle. The only good news was that the bone marrow bx they did last Fri was negative for any leukemia cells. Unfortunately the the platelet crisis is so grave that this will probably be the factor that will take his life. He is not making any platelets therefore he has no clotting factor and that is why he can not stop bleeding in his lungs and other organs. They have done 4 plasmaphresis to cleanse his blood of antibodies but we still do not know if this has worked. His wife, daugther, son , and daughter in law where there with him today for his son's 25th birthday. They were picking my dad up to go to dinner. Don loved family outtings and I am sure that he is with them in spirit. I am trying to stay positive as I can and realize that he gave it all he had and did not give up even now he is still fighting to live.

Now for you my dear......although this is a setback you can proceed with this new treatment plan. Some cancers are resistant to certain treatments for whatever reason. Stage IV is harder to treat but not impossible to treat. We had many patients that had Stage IV lymphoma and all survived. You are young so that is a definite advantage. Having chemo in the hospital is so much better than in the outpatient setting. You are monitored all the time and when you have something that needs to be addressed it will be right there and save you from further problems. When you are an op and go home you do not have the hands on attention you deserve. Stay positive and focused on this new treatment. Do everything they tell you, like eatting, drinking plenty of fluids, etc. If you need a bone marrow or stem cell in the future we will be here for you. Do not think of Don's situation. He had only
a 20% chance of survival before he had the stem cell transplant. His type of leukemia that is secondary to radiation has a very poor cure rate and response rate. The odds were stacked against him from the first day he was dx'ed. He took the bull by the horns and rode this devil until he could not
fight anymore. I believe he is still fighting and that is why he is still with us.
I told him about you before and he said for you to keep fighting until.....The
until is when the doctors tell you there is no hope. They will not tell you that because you have a good chance of beating this. I have seen people beat it with your Stage. YOU have to believe that you will beat this. It has to fill your spirit and soul and run over all the doubts and fears you have. Live one day at a time....one dream at a time....You are a beautiful person in this world. Your caring for others is beyond anything I have seen. We all love you here and I will pray for you everyday.

Be strong and fight this devil called cancer and punch it in the face.

Love
Linda

Hi,

I'm sorry to intrude on this thread, but I read Linda's last email and I am so deeply touched that I had to write.

The support from friends, family, and most especially people going through the same struggle is what helped me keep my sanity through my husband's treatment and now remission. The fact that I could type my worries to those who'd understand and get comfort was invaluable. I felt almost neurotic some days, but my cyber-friends from the Hodgkins mail list were always there.

Faith in God has helped tremendously, but hearing from those who are going, or have gone through "it" is a perspective that most friends and family can't always provide.

But most importantly, I want to offer my prayers and positive wishes to you all.

Linda, I pray for courage, strength and peace for you, Don and your family. If I had to imagine what an angel on earth would be, I think you'd be it. I have viewed several of your replies and you are so selfless. God bless you.

CC, I pray for you to be able to conquer this battle and know that there are MANY positive success stories with stem cell transplants. We've met some of those people through our support group and perhaps there is a support group you may be able to participate in as well.

Singer, I pray you'll find the one moment of clarity that will make your worries disappear. I've had these moments of clarity from time to time, and it may just be a word of encouragement, a shared success story, or a success story I read about on the Leukemia and Lymphoma Society's website that lifted my spirits.

My prayers go out to EVERYONE on this board.

Hugs,

Eva

Dear Eva,
You brought tears to my eyes. I do not deserve your compliment. I am sorry that you too have had to go through this with your husband. It is always so
wonderful and touching to see so many people reach out to help one another.

We have so many brave people on this site. It is overwhelming. We all can
learn, share and support one another in times like this. It does help to hear
other stories so we know we are not alone.

My brother beat lymphoma but unfortunately he got leukemia. My mother also had lymphoma but survived it and lived another 2yrs. She passed from a heart attack. I know more people who have survived lymphoma than passed
away from it. Each yr. more and more treatments are being discovered to eradicate this disease.

Thank you for your kindness and caring about others. There are no strangers, only friends we have yet to meet.

Have a wonderful Thanksgiving
Linda

Gosh I feel like I'm in the twilight zone. Everytime I come to this page I'm the only one here, no guests nothing and all the posts are back in time. This has been going on since last evening. :confused:

I'm running out for repeat bloodwork. I'm reply better when I get back. I'm running late.

Hugs,

Hello,

Yes...you DO deserve that compliment, Linda.

I've told you, from the get-go, your posts have, many times, made a huge difference.
I only wish I could help you, now.

I mentioned on my other post, that I'm actually feeling...hmmm....maybe 10% better today. It's probably psychosomatic--but, hey, whatever helps, right?

I'm not too thrilled with the itchy rash left from radiation. It's all over my collarbone area & into my chest some. I feel like a science project. They assured me it will go away with time (fingers crossed). Between the rash, my incision site, and my port---I look like a human pin cushion!

I have to get going & fill out TONS of papers for disability. I can't believe how many there are! There's no way I could work at the capacity I was. I just don't have the strength right now. Hopefully, I'll get approved for it, but I'm not holding my breath.

CC, we're here for you.

love, S.

CC,
I posted the last post, before you posted.

Hey....I had to contact the administrator here, because it was happening to me, too.
I thought it was my server, but I'm starting to think it's this particular site, they're having problems with.
If you're reading this, and it continues, contact them, or maybe start another thread.
It could be the thread I started, that's messing up...for whatever reason. It was doing that to me, all evening yesterday.

Good luck with your bloodwork.
Keep us posted.
You're always in my prayers.
love, S.

CC
I do not know what is going on with your computer. We are here. I posted last night to you. Hope that you can get your computer going ok.

Let us know how you are doing. I have an idea., maybe you should hit the
refresh button on your computer. I do not know what icon you have that refreshes but that button may bring up all current posts.


Singer,
Glad that you are doing good even if it is alittle. You will get there. Are you doing anything for Thanksgiving?

I will check back later. It is warm here today but gloomy. We are gettting another cold front. I wish it would snow. I always love that.

Love
Linda

Hi Linda,
You're right about the "refresh" button...but, I think it just might be this particular thread having problems, for whatever reason.

It's going to take awhile for me to "snap out of it." I've never experienced a feeling like this before. It has to be the chemo & radiation messing up my brain chemistry. I feel "empty."

I don't really have a lot of support, either (in the flesh). I think I told you earlier, I didn't want my "so-called" friends knowing my dx. When I started really examining my friendships, I realized they were all somewhat superficial, and I basically have "x'd" them all. Now, I'm finding myself lonely for companionship, outside of family....but, I still don't want those people from my past, in my life. It was always, "take, take, take" from them. I was the "giver." It took this disease to make me realize that. I suppose that's one reason why I'm seeking help from a psychologist.

Yes, snow would be nice. There's something very calm & beautiful about a soft, quiet snow.

I have no plans for Thanksgiving. Do you? My husband and I are doing the "day at a time" thing, to see how I feel. I'm not much of a cook---but, I'm great at going out to eat. The last few years, we had to eat "on the road." I think we've eaten at the Cracker Barrel the last few Thanksgiving's.

I can't believe the holidays are right around the corner!

XO, S.

Singer,
Sorry that you are having a hard time snapping out of it. Been there done that. When I think of all the times I was so depressed and felt hopeless when nothing in my life was really wrong . You have alot of things to be depressed about but so much more to be thankful for. But unfortuately depression does not care about what reality is. It comes when it wants and leaves when it wants. I never thought I would be a depressed personh but I think on some level I have always been. I guess I was better at hiding it when I was young.


That is too bad that your so called friends are not really friends at all. I have had my share of them. Just wanting something from me always taking never
giving. I have 3 great friends that I have had for yrs. One girlfriend for 30 yrs., another for over 20 yrs. and another for 15 yrs. I love them all dearly but they all live in Fla. One is 61, another 51 and another 39. I like variety in friends. Ha ha. They are just wonderful people and are like my sisters.
I know if we lived close we would be friends. I am the negative one in this circle of friends and they have all put up with me and loved me anyway. I have learned alot from them and admire each of them.

I was planning on hosting Thanksgiving this year and Christmas and New Years. My daughters in-laws did it all last year. Next yr. when Jenn's house is completely renovated she will take over the holiday festivities.

I always had Christmas at my home with the whole family and friends for at least 30 yrs. I enjoyed it. We had some wonderful times. Don and his wife
use to host Thanksgiving. Now my Dad has called Meals on Wheels for his dinner to come and he is going to share it with his friend Sherman. He said they will play his CD's of all his oldies. I wanted him here but he does not want to leave Don. I don't blame him.....

There is still no change with Don. I just do not know what to think about it all. If I let myself dwell on it I will not be able to function. I just keep praying for that miracle. That is all we can do.

Take care......... By the way, I love Cracker Barrell. I would like to eat Thanksgiving there but then you have no leftovers. Your profession I guess did not allow you to have family around. Maybe you can now enjoy the family now during the holiday.

Love
Linda

Hi.
I should probably start a new thread. I think there's something wrong with this one...maybe it's got a poltergeist in it!

I think the Zoloft, plus a little affirmative thinking, is going to see me through.
I think it 'does' take a long time to "snap out of it," but, I'm trying my best.

I rearranged my living room furniture this afternoon---it was rough, but I did it.
Actually, I just moved a loveseat to the front window, for a better view of the outside world. It's amazing what a little sunshine and a view of the outside world, does for your spirit. That will be a nice place to read (there's a big picture window there).
I had to move my "kitty tree," so the cat's aren't real thrilled with me right now.
They'll get used to it. I was catering to them too much....they're SO spoiled.

Yes, I'm feeling regret over "x-ing" so many friends, but quite frankly, I just didn't want the world to know what I was going through. I have one friend that was always "The Mouth Of The South" if you know what I mean....and I know she would've announced my illness to everyone. I really don't know why I'm so guarded---yet, another reason for therapy, I guess.

My family has never really "planned" any holidays. I regret that, too. It's always a last minute thing---yet, another "oddity" that I've dealt with throughout the years. I think I'm much more family-oriented than most of my family members. They all seem to stick with their "immediate" family members & make plans. I'll have to check on my parents, though. I've been alienating myself from them lately---which I know is not good. It's not "like" me to do that...that's why I started the Zoloft. I felt I was retreating...and not to a "good" place. I so badly need to hear some good news concerning my health. I feel bad saying that, when I know you & CC are facing such a hard time.
It's just that treatment has been sooo consuming, and a shred of hope, would make all the difference. I have to face the fact though, that in spite of it all, there's a chance that my one node in my chest, may still have some bad cells. Dear God, I pray not.
I want my life back so bad, I can taste it.
I swear, I'll do some good for Mankind. I won't just be "spinning my wheels" anymore.
Now, I have a whole different "take" on life. It's so precious & I want to make a difference. Perhaps, through singing. I've had so many "close calls" with my career, doing something bigger & better---but, like my psychologist says, maybe I was afraid of success.
For Heaven's sake. I don't know why.... Maybe just because it would've been a major change. NOW, I'm ready. I have to live for me....& my husband.... not everyone else that was pulling at me.
Hey, I think I'm having a bit of a light-bulb moment.
This forum is great for that!
So, Linda you're gearing up for Thanksgiving?
How fun. I know it's a bitter-sweet time for you, with Don's situation.
Please keep us posted. He has a lot of people pulling for him here.
I love all these people here, too.
I pray CC is doing o.k. today. I know she had bloodwork earlier. She's an amazing young lady, isn't she?

I heard snow is in the forecast.
Get ready....
:) love, S.

I don't think it's this thread Singer. It's so weird what's going on. When I come to this site, it's happened twice again, I'm the only one here, no visitors no one looking but me. And this post is not here. It's very strange.

Eva don't ever think you're intruding. Please jump in whenever you want. Without everyone here pulling for each other it would be a long haul and for some of us a lonely one. :(

Singer I like that light bulb moment. It's seems you're heading in the right direction. And you do have your life back, it's there now, it's over and you can enjoy the sunshine and all God's creatures like your kitties.

Linda I'm so sorry about what's going on with Don. I'm starting to get educated about all this and it's so sad. I was telling the chemo nurses about him today and they told me to tell you they're all praying for him too. And yes, I did mean that you "weren't" posting. My minds so jumbled right now. :confused: I haven't given up praying Linda, and I will keep on praying.

The holidays are coming and this is getting harder and harder. I don't know what I'm going to do because I'm not sure where I'll be. Maybe just a little turkey and stuffing would do me fine. :D

My blood work came out okay and Friday and go into the hospital for the first RICE treatment. It sounds pretty grueling but if I'm to beat this monster I have to give it my all. I've been feeling pretty good from this off time but now here we go again. Does anyone know if those shots hurt? I'm dreading them again.

I hope when I come back on later I'm not the only one here. It's so eery. :(

CC & others,
I started a new thread.
I was having difficulty with that post.
Hope all is well.
:)