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Update on Brian


Patkid

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Well.........

It is day 2 of round 2. We leave at 10.

Brian had a rough night even with all the meds he has for nausea, heartburn and so on.............

Last round he started to perk on the Saturday after the 3 infusions.......about 4 PM. We are hanging on till then.

While we were at the Cancer Center yesterday for his 8 hour infusion, I asked for and received copies of his medical record as it pertains to this LC diagnosis. I am not sure that was a good idea, but I feel fully informed. Brian has no desire to analyze things..........he is just committed to doing all he can to help the medicines work to shrink the turmors. I am glad. He just says he trusts his doctors and God. He is just awesome.

I have read and read and read till my eyes are falling out. Then, since there was not much sleeping going on last night anyway, I did a lot of research on the internet armed w/ my new vocabulary. I am convinced Bri is getting top notch care. He had the latest fusion type CT/PET Scan, the very last minute types of staining for his biopsy in addition to the microscope work.....................................

Oncology and PCP notes repeat over and over that Brian's clinical presentation DOES NOT MATCH HIS DIAGNOSIS. In fact his oncologist states that Brian simply is not sick enough to have this extensive disease.

He does have extensive disease. The diagnosis is : Non Small Cell Lung Cancer with nueroendocrine features (that means it is agressive, like small cell lung cancer), adenopathy, (it is in his lymphatic system), and mets to liver. His lung tumor is 5X7 CM and his liver tumor is 5X6 cm. He is not a candidate for surgery or for radiation, due to the metasteses and location of tumors The lung tumor is in his left lung and has grown around a main artery and bronchii...........I don't have the papers here so I am sure I am making a few mistakes in spelling and vocabulary----------------------plus I am brain dead from no sleep. I understand that it is rare that Brian does not have mets to his brain or his bones............ I am grateful, tho, for any and all breaks that he an catch.

His next scan is on April 5. We see the oncologist the week after. They will ascertain if we are getting good shrinkage (not in the Seinfeld way) and if so he will continue with the chemo he gets now. If, not they will adjust the poison.

Yucky. I do feel that it is appropriate that this is Holy Week. Good Friday is a good day to feel like we do. Brian is awesome. I love him so much and we are getting used to the whole idea.

One of our wonderful grandchildren, Gabby, was here last Sunday with her family and she snuggled up to me and said, "I love you and grandpa so much!, I like that you are his nurse." It melted me into my shoes. She is pretty awestruck by Brian's bald look. His hair was so pretty and silvery..............what a shame. A friend said he found a "chemo cap" for Brian - something knitty I guess, I hope Brian will like/try it, cuz I am pretty tired of the ball cap look. He is so funny. He turns it around backward and states: "I AM NOW IN RALLY MODE".

.Isn't it odd that we took a perfectly happy, healthy man and turned him into a sickly bald guy just over an x-ray?

You guys, we were at the cancer center all day yesterday, headed back there today and then I was up and down with Bri all night. I have not had time to catch up on all the posts...................Please know we are thinking of you and we love you and we need you.

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Take a deep breath!

Always get a 2nd opinion and ask the doc to go over the report with you. It's hard looking it up on the internet and trying to figure it out yourself.

My last report I had the "nodules" the size of CM not MM, boy that made a difference!

I obtained copies of all my med records since cancer, it's very hard to read without crying. It's hard to read about the surgey without getting emotional. But now I understand everything that has been done to me.

Hang on! Come here for support. PM or email if you need me!

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Pat & Bri

thank you so much for this update. Very glad that you got the reports and went through them. It sounds as if this has really helped to put your mind at ease, having the confidence now that everything that has been done is correctly done according to state of the art procedures. Now, that is a piece you can let go and move on to concentrate on others. I commend you for putting your nose to the grindstone to figure this out. It is not an easy task. For me, it was very emotional to face the written words of the doctors and knowing that they were not good words, but they were facts. Wore me out too.

You two are doing a bang up job. I love how you are getting in there and just doing what needs to get done. You know I already love ya! Hope he gets rid of that sick tummy and soon!

love, Cindi o'h

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Brian is really getting his butt kicked this time. He threw up all morning and all during infusion.............but a does of Ativan (IV Push) and he got some relief. He has been sleeping for about an hour now and seems to be resting really well.

He surely is a good sport. It is hard to believe that a month ago he was working 10 hour nights and working on his '56 Chevy all weekend plus playing with grandchildren and all the regular stuff.

Can't wait to get some good tumor shrinkage so he can feel a bit better.

He has Protonix for heartburn, the nausea pill (starts w/ Z..........can't remember right now), and ativan now.

Next round they are going to use AmbeN? We are working to get preapproval for that for Insurance.

Man, there is so much to learn!!

Brian is really determined to work w/ the meds to shrink the tumors and keeps quoting DADSTIMEON "spirits are good".

Bless his heart and all of yours.

Thank you for being here.

Pat

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Dear Pat,

You and Brian sound like quite a team!!! Together you can conquer anything!! I am sorry Brian had such a bad time with the treatment, hopefully things will improve in that area. God Bless you at this special time of year and please know I pray for you daily. Love, Sharon

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Pat,

I'm really sorry to hear that Brian is having such a hard time with treatment. It happens, and I know it's hard on you. It was hard on me when my hubby was knocked on his butt from treatment. I so very vividly remember how scared and sad I was. Just know in your heart that it's working to kick the cancer to hell where it belongs. He will get better. It may take a while, but he will get better.

BIG HUGS!!!

Love,

Peggy

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