Posting an update on my nightmare...

[Bev G]

Hi all:

Thanks again for all the support, prayers and hugs. Please keep them up. I am cutting and pasting the following from the "wives" thread so I don't have to gather energy to re-type it:

... thank you so much for your kind welcomes. Today has been almost horrible beyond words and I am so exhausted and not thinking straight. I had to take my husband to the ER this morning (he was discharged from the hospital on Wednesday after the excision of the cancerous node) because he was much sicker--vomiting and a little short of breath. The pathology came back from the node, but more testing is still needed. The first set of news is it is "diffuse large cell lymphoma" (DLCL), very, very rapidly progressive. They admitted him and started chemo TONIGHT (they had planned to start it by next Friday) because everything is progressing so fast that his liver could not have tolerated the chemo if they had waited to give it to him (ie he might not have lasted over the weekend). They are giving him four chemo drugs, slowly and low-dose over the next FOUR days as an in-patient, and monitoring about a million things as they do so. One of the chemos is heart-toxic and they did not have time to do the test on his heart as they wanted to before starting the chemo, feeling he couldn't last until Monday, when they could do this specialized test to start chemo. They also could not wait to put a port in, so he will be getting this first round through a PICC line

All of the terminology is SO different than CRC, all the chemo side effects are different, EVERYTHING is different, and I feel so overwhelmed. I can't understand all the info, and some truly horrifying things can happen as a result of the "killing off" quickly of this tumor load (ie the treatment could kill him). I am breathless with terror, and this is all so fast---diagnosis just 4 days ago. I don't think I am doing well at all, but I'm doing the best I can. I have been having problems with him, definitely, but this is the man who I loved and have been with for 30 years, and I am grief-stricken by what he is going through, and by what I may soon be going through.

Thank you all for your support.

Love,

Bev

[seva]

Bev, That sounds like scary stuff. I am glad they have started treatment for his aggressive cancer and have many qualified people watching over him. I am praying for a happy ending. Is your son avaiable to help? Don't forget to take care of yourself.

Please accept a HUG from me.

SEVA

[BrownBagger]

Hang in there, Bev. My thoughts are with you.

[Laurettas]

Bev, I am so sorry to hear all of this. How frightening for you. Can't imagine having to deal with something that aggressive. There is just no time to think , plan, and decide, is there? I hope that you have someone to lean on as you deal with this crisis. I guess all you can do is to focus on the immediate issue at hand and deal with each thing as it comes up. Sounds like you have doctors that are on top of it so that is good. Hang in there. You are in our thoughts and prayers.

[Bob_Weiss]

God bless you and your husband. You have provided valuable support to so many of us, and this is definitely payback time for us to help in your hour of need. Hopefully, it will only be a short time until events slow down and you will be able take command of the situation.

[jgall]

Bev, so sorry for all you're going through. I hope you have someone in your real life who can help you and "mother" you the way you have for all of us.

No matter what you've been through with him in the past, I'm sure all that is put aside and distant now in his time of need. We certainly understand that and would probably be surprised if you approached it in any other way that with the loving and compassionate way that is your very nature. We are all here for you and thinking about you. I'm sure we all wish we could be there in person!

Julia

[Gaelen]

Bev, these first few days are some of the worst. I remember the week that my sister was dx'd and admitted to the hospital from the ER. They do AML chemo in a similar way, in-hospital, and they weren't sure my sister would make it through her first round either.

The local chapter of the Leukemia & Lymphoma Society was there, offering support to my brother-in-law, within a couple days. You may want to contact your Pittsburg local chapter; LLS has a pretty strong support program in place for family and caregivers. They've been really helpful.

Yes - all the terms, the drugs, the ways of giving the drugs for blood diseases are different from CRC. I already knew a lot about some of them, but I had a whirlwind week of catching up so that I could give updates to my family that they could understand. It was easiest for me to just "forget" what I know about chemo dosing and focus on the new world of leukemia/lymphoma drugs.

My strongest thoughts.

[dianetavegia]

Bev, my heart just breaks for you. I am remembering you both in prayer.

Diane

[pollo65]

Bev, I guess all I can do is pray for you, and that I will.
pollo 65

[Marilina24]

Even though my husband Stephen died while on a clinical trial for his colon cancer, I continue to come back to this forum to read about all the people that have had an influence on me. You especially offered so much to the readers and those suffering with this horrible disease. I feel you are going to get thru this and that the aggressive therapy your husband is getting will soon show it is working. What a nightmare for you and you DH. I was married for over 24 years and our marriage was not perfect either. But in the end, looking back, I can say he changed my life for the better and I believe I changed his for the better.

Steve was never in pain. He had a terrible tickle/itch that we never found any help for. He said it was the worse thing he ever had. Once he was heavily sedated and all hope was gone, he finally had no itch and he was at peace.

I hope the weekend brings renewed optimism for you and your family. You deserve it.

Marilyn

[JAZZToo]

Bev
Sending industrial strength super strong healing thoughts to you and your husband. You must feel like you are trapped in the middle of a nightmare and can't wake up. I can't imagine having to deal with such a situation, especially while going through the worry and uncertainty of your own cancer treatment. I hope you have relatives, neighbors or friends to help you cope with the very heavy burden that is now on your shoulders. We will support you on this Board as you have supported and given encouragement to so many others.
Take care of yourself hope for the best.
Leslie

[abuttigi]

Oh Bev, I wish there was something I could say to ease your pain... and I wish I could teleport to you for one second and give you a big hug!

My thoughts and prayers are with you. You are such a sweet woman, and I'm sure your husband feels your love every second of everyday.

Angie

[sg101]

Bev-
I am with Gaelen - toss everything you know about CRC as it is irrelevant when it comes to hematologic malignancies. Everything whizzes by at a much more rapid pace, and I can only imagine how overwhelmed you must feel right now. It sounds like the doctors are doing everything that they can right now to stabilize the situation. My heart goes out to you and although you will find support here, I hope that you take up the suggestion to find a leukemia/lymphoma support group as well.

[Terry]

Oh Bev my heart breaks for you as I read this. You shouldn't have to go through this after everything you've been through. Life is not fair, that's definite. I don't have any knowledge of this cancer otherthan a son in law of one of our church family had this in 07' and had the chemo, and today is still NED. They didn't expect him to live long. Perhaps this can give you some hope.

Try and take a little time to take some deep breaths and relax a little. I know it won't be easy, but I really think stress can effect cancer, not to mention diabetes. Eat like you should be, get some rest and if you need it take a xanax or ativan to decrease your stress level. You will be no good to him if you get sick.

Your an RN and your husband is a doctor, use that knowledge to fight for him and yourself. Of course sometimes being in the health care field can scare you even more than having little information.

I pray for the healing hand of God to be placed on your husband and yourself.

Terry

[paula]

Been away for awhile and just saw this. Bev, just know I'm holding you and your husband in my heart and in the Light. Wish I could wave a magic wand but all I can do is let you know how much I care. Blessings for today and the coming days,

Paula