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UNICORN212's Photo UNICORN212 Posts: 9,356
10/5/11 12:02 A

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He is home now, weak and tired, but happy to be home and happier to be in remission. The nurses on the floor bought him a card and a stuffed cat. It was a bittersweet leave-taking. We will have to go back and visit.

BTW, all three chemo sessions, he walked out of the hospital, carrying his own small suitcase. Each time, he was in for 17 to 18 days. I think he has lost about 25 pounds.

Edited by: UNICORN212 at: 10/5/2011 (00:02)
~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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UNICORN212's Photo UNICORN212 Posts: 9,356
10/4/11 12:24 A

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He has just finished round three and should be released in a day or two. His CT was clear and he is said to be in remission. The PET will follow in about three months and we will know more then.

~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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UNICORN212's Photo UNICORN212 Posts: 9,356
9/17/11 10:51 A

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Just an update because I see I have been lax. DH was in for 18 days on round 2, and he was released last Saturday. Today he checks in for round three, which will probably be for 17 to 19 days. After this, we wait three months for a PET, which will hopefully be clear. I sure hope the chemo has done its job and the cancer is dead.

~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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UNICORN212's Photo UNICORN212 Posts: 9,356
8/25/11 12:06 A

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Mike is back in the hospital for session 2. We checked him in this afternoon and I stayed for a while, then left for dinner. I went back after dinner and they were already giving him the chemo. Last time they waited until 11 pm. They gave him a reduced dose of the one he reacted to last time - 2.0 mg instead of 3.0 - hopefully he will not react so badly this time. But he was already losing his taste buds when I left, so it is working fast. Hopefully he will be out in 13 days and not 17 this time. It is hard to walk out of there, leaving him behind.

~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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UNICORN212's Photo UNICORN212 Posts: 9,356
8/23/11 9:55 P

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Does anyone hear hysterical laughter? I sure do!

DH is doing great. His blood work is back to normal even though he has only been out of the hospital for 6 days. So... (drum roll please) ...as soon as his room is ready, he checks in for round 2! I am trying hard to put a positive spin on this. I keep telling myself that in 6 weeks this should be done. 14 to 17 days in for round 2, a week out, then 14 to 17 days in for round 3, and we will hopefully have a clear CT scan and he will be cured.

This is happening too quick! I hope we can both handle this! I also hope they will keep is job open and we won't go bankrupt because of this. We still do not have bills, and we do not know who will pay for what...

~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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MRS_AVERY's Photo MRS_AVERY SparkPoints: (5,532)
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8/18/11 3:32 P

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Let the healing begin. Wishing you both a smooth road ahead.

~~ Ellie from Ridgecrest, CA
Run, walk, or crawl... see you at the finish line.

pages.teamintraining.org/vtnt
/dublin12/EllieAvery


Cancer vs Ellie:
Round 1: Ellie Won! 4/15/10
Round 2: Ellie Won! 10/25/10
Round 3: Ellie Won! 5/31/12

pepperedworld.blogspot.com


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UNICORN212's Photo UNICORN212 Posts: 9,356
8/18/11 2:13 P

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He is finally home after 16 days....

~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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UNICORN212's Photo UNICORN212 Posts: 9,356
8/14/11 12:37 A

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DH is doing much better now that he is off the chemo. They were hitting him with twice the published regimen dose. He is now on the two drugs that rebuild the folic acid and white cells, and is much less nauseous. I think it was more him that did not want visitors - he felt so lousy. I hope he can get out by Tuesday.

~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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MRS_AVERY's Photo MRS_AVERY SparkPoints: (5,532)
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8/13/11 4:50 P

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Nancy, What hospital are you guys in? At City of Hope they encouraged visitors, as long as no one had colds or flus. They made my husband wear a mask and gloves, he even got to spend the night. For my transplant, I was in hospital 25 days. It is awful to not be allowed out of your room for that long. But visitors help. So go see your husband, even if you only get to wave at him from a window. You'll lift his spirits for sure.

~~ Ellie from Ridgecrest, CA
Run, walk, or crawl... see you at the finish line.

pages.teamintraining.org/vtnt
/dublin12/EllieAvery


Cancer vs Ellie:
Round 1: Ellie Won! 4/15/10
Round 2: Ellie Won! 10/25/10
Round 3: Ellie Won! 5/31/12

pepperedworld.blogspot.com


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UNICORN212's Photo UNICORN212 Posts: 9,356
8/13/11 3:47 P

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The Metho stuff is done and now he is on Leucovorin. White cells are really low. I am not sure if they will let me visit today. The in-laws headed home for a few days to take care of mail, bills and prescriptions. They should be back Tues or Wed. Hopefully he will be out of the hospital on Tuesday. That will be 16 days...

~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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UNICORN212's Photo UNICORN212 Posts: 9,356
8/12/11 12:43 A

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Well, the Day 10 treatment is now underway, even though it is day 11. They finally started it at noon. Methotyrexate. He is about 9 1/2 hours into the 24 hour treatment, with two days of healing stuff to follow. So far he is handling it pretty well. He could be acting. It is just so hard to leave him there. He will probably not be home until Monday.

~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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UNICORN212's Photo UNICORN212 Posts: 9,356
8/11/11 12:25 A

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Thanks, Jan. They opted to skip the day 8 dose of Vincristine and the jaw pain is dissipating.

~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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ACTIVE_AT_60's Photo ACTIVE_AT_60 Posts: 3,034
8/10/11 5:53 A

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I have heard people having jaw pain and oropharyngeal pain after vincristine and vinblastine. If I remember correct it is about three days after the infusion and last about 2-3 days, but can be quite painful.



"You are the CEO of your one person company" Chris 'Macca' McCormack three time ironman world champion.
UNICORN212's Photo UNICORN212 Posts: 9,356
8/10/11 12:21 A

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I think the one tomorrow is methotrexate. The one they skipped yesterday was Vincristine. It was causing severe constipation which was finally taken care of today (after 4 or 5 days). The Metho stuff requires 2 days of drugs afterwards to remove it from the body. He may not get out until Monday, which would be a full 2 weeks in. I hope this does not bankrupt us!

~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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MRS_AVERY's Photo MRS_AVERY SparkPoints: (5,532)
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8/9/11 11:24 P

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What kind of chemo is he having?

I had BEAM right before my stem cell transplant. It was 8 days of chemo, I think. Bad things happen to everyone on the floor. For me, I my esophagus got tore up by the chemo, so I couldn't swallow, not even liquid foods or meds. I got put on IV nutrition. Other in the floor had lungs collapse, one person even went to the ICU. I think I had it the easiest of everyone. My mom said that I slept pretty much for 3 or 4 days straight, only waking up for bathroom breaks.

Stay positive. They'll resume the chemo when his body is strong enough for it. Just stay strong. That's important.


~~ Ellie from Ridgecrest, CA
Run, walk, or crawl... see you at the finish line.

pages.teamintraining.org/vtnt
/dublin12/EllieAvery


Cancer vs Ellie:
Round 1: Ellie Won! 4/15/10
Round 2: Ellie Won! 10/25/10
Round 3: Ellie Won! 5/31/12

pepperedworld.blogspot.com


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UNICORN212's Photo UNICORN212 Posts: 9,356
8/9/11 12:37 A

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DH is having a lot of pain in his jaw (both sides) - has anyone run into that? They did a CT scan and think it might be an infection, so he is on antibiotics. Liver enzymes are elevated too, so he is not getting his Day 8 chemo. He gets a bad one on Wednesday - Day 10, so I guess he gets an extra day to heal up for that one. Then he gets two days of flush, and hopefully can come home.

~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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LESLEYCORAL SparkPoints: (8,604)
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7/30/11 9:36 P

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Hi Unicorn
Diagnosis is always a bummer. I was told of this recipe which might help. Please let your hubby do this as well as he needs to let out his emotions, do not let him be the 'brave' one.

Forget about neighbours (have someone on security)
Find a space - the garage or a open place
Find a pillow or punch bag
Put on some loose clothing

Scream
jump up and down
Hit punch bag
Have a massive tantrum
Cry

Find some one to give you a hug
then take six jelly beans
and a relaxing bath.

The odds are on his side
Take advantage of your local support
The people there are really helpful and wonderful

Remember You Can Handle It
I have used this recipe successfully

emoticon emoticon emoticon emoticon

Edited by: LESLEYCORAL at: 7/30/2011 (21:40)
MRS_AVERY's Photo MRS_AVERY SparkPoints: (5,532)
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7/30/11 1:26 A

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Nancy, I'm so sorry. I know you were fearing Burketts. I can only tell you that tears are normal. Cancer is an insidious intruder, and your best plan of attack is to always communicate your feelings, the more you express yourself the less power you give this disease. Please give your husband a message for me... Keep strong and positive, science has come a long way.

Please let me know if I can do anything for you or for your husband. I'm here if you need to vent, or if you just need someone to cry with. Wishing you a smooth road ahead.

~~ Ellie from Ridgecrest, CA
Run, walk, or crawl... see you at the finish line.

pages.teamintraining.org/vtnt
/dublin12/EllieAvery


Cancer vs Ellie:
Round 1: Ellie Won! 4/15/10
Round 2: Ellie Won! 10/25/10
Round 3: Ellie Won! 5/31/12

pepperedworld.blogspot.com


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ACTIVE_AT_60's Photo ACTIVE_AT_60 Posts: 3,034
7/29/11 7:25 P

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Hi Nancy - your feelings are very common. This is what I suggest you do - contact the patient service coordinator of the LLS at your local chapter and ask who they think you can talk with.

Second, I see you are in Arizona. There should be a chapter/office of the Wellness community they are a support organization for families touched by cancer.




"You are the CEO of your one person company" Chris 'Macca' McCormack three time ironman world champion.
UNICORN212's Photo UNICORN212 Posts: 9,356
7/29/11 7:20 P

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My husband has Burkitt Lymphoma, but they say it is in the early stages, and they are putting him in the hospital for chemo on Monday. He will probably be there a week. After that, who knows. The doctor thinks he has a 90% chance, but this still terrifies me. I am having a lot of trouble with the crying. Tears are too close to the surface all the time.

We started this journey 6/22 when his lymph nodes popped up. Since then, he has seen 3 doctors, had a needle biopsy, lymph node removal, CT scan, PET scan, MUGA scan and God only knows what else. He is only 53 and this really sucks. He may pull through this but I think I will go off the deep end.

~Nancy

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

"I would rather live my life as if there is a God, and die to find out there isn't, than to live my life as if there isn't, and die to find out there is."


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