from Mom ...

The saga continues ...

I’ll just get right to it.  I came home from California with a nasty flu and have been in bed for the better part of the week.  I did have labs drawn on Tuesday and was told by my oncology nurse that my white count was too low for me to have the Avastin that was scheduled for Wednesday.  My CA125 increased again from 674 to 876.  Not what we hoped for but what we have come to expect. 

I had my labs rechecked this a.m. and then I'm flying to Mississippi in the morning.  Thanks to my friend Ginger, who is a nurse at the hospital down there, if my labs are better I can have my next Avastin infusion down on the coast.  So, that’s the plan, Sam.  Unless something unforeseen happens (in my life ... never).

Every day may not be good, but there’s something good in every day. — Author Unknown

Love you all,

Nyshie

from BGGN!

Happy New Year!  I started on my first dose of Avastin last week and so far so good.  No side effects, as everyone predicted.  I’m having routine labs done weekly to monitor “things” and will have a CA125 just prior to my next infusion on January 30^th.  My oncologist said the best way to know if it’s working or not will be changes in my CA125 or an increase in symptoms. Waiting and wondering ... sigh ...

Sunday, Paul and I are off to Northern California for a brief visit with my brother Gene and then with Paul’s brother, John.  Home for a week and off to Mississippi for 2 weeks to take care of my mother so my sister can take a much deserved vacation in Hawaii.  Otherwise, all is quiet on the Western front.

Love you all,

Nyshie

from Mom ...

Paul and I just got home from seeing my oncologist and reviewing labs. My CA125 (tumor marker) continues to climb, from 517 last month to 684 today. After much discussion and the realization that this just isn’t working, we are considering trying a course of Avastin. Briefly, it is not a chemotherapy agent, but instead is an angiogenesis inhibitor. The tumors send out capillaries to bring them life sustaining fluids, etc. This process is called angiogenesis. The Avastin blocks the capillaries from growing, thus shrinking the tumors and killing them (hypothetically). We have discussed this previously but one of the side effects is a perforated bowel (bad juju) and with my history of a gastric bleed and so many bowel surgeries, we’ve been hesitant to try it. (The risk is very rare and my oncologist is comfortable with this decision.) Let’s just say I’ve reached the point with my disease progression that it’s worth trying. The office now has to gain approval from my insurance company and we’re good to go. It may take a week or so for the approval so, no chemo today.


On a happier note, we had a nice Christmas with some of the kids (notice I didn’t say quiet) and my mom is doing much better. We still have a lot to be thankful for and are looking forward to a busy 2013.

I also wanted to thank all of you for the abundance of good wishes/holiday cards/calls, etc. I, of course, have done nothing about getting cards out. Just know that we appreciate all of the continuing love and support. An old quote, but it still works for me:

“ There are two ways to journey through life. You can march ... or you can dance.”

I’m still dancing.

Love you all,
Nyshie

A couple more pics from Chicago ...

Chicago weekend ....

We are having a great time in Chicago! 

I suprised Mom, we walked off the plane on Thursday and Ben was sitting in the airport.  Mom's jaw hit the ground and I think she almost fainted. 

This pic is from the 96th floor of the Hancock Bldg. 

Great food, great city, great kids & one fabulous mama (BGGN)!

Loving, Maggie

from Mom ...

Apparently my chemo brain is affecting my memory. After reading my last blog update, I realized that my CA125 a month ago was 397. Paul and I saw the oncologist this past Thursday and it has increased again to 517. We realize that this means the mild chemo, while it may be slowing the tumor growth, it is not diminishing it at all. I have been feeling so great with really good energy and no symptoms to speak of, the doctor agreed to let me stay on the Lipodox/Doxil for another month. At least we should have a nice holiday season at home for the first time in three years.

Maggie and I are starting our holiday celebration with a quick trip to Chicago next week to see the opening night of the Joffrey Ballet's performance of the Nutcracker.  The Nutcracker is a long standing tradition for us.

We had a wonderful Thanksgiving with Ben and Rebecca, Robert, Shane, L’il Nyshie, Maggie and family and Beth and family. We truly do have so much to be thankful for.

On a sad note, my 97 year old mother fell shortly after our last visit down to the coast and has been essentially bed ridden since. With probably veterbrae fractures, possible hip and shoulder, she is just now getting off pain meds, but still unable to sit up in her wheel chair for longer than a few minutes. I may be heading back down for a short visit again before Christmas.



In three words I can sum up everything I have learned about life ... it goes on.
Robert Frost



Best holiday wishes to all of you.  I love you.
Big Giant Grandma Nysh

from Mom ...

Paul and I just got home from seeing the doctor and having chemo.  Unfortunately my CA125 has gone up from 261 last month to 397.  This probably indicates that the chemo may not be working as we had hoped, but because I have been feeling so well, he wanted me to stay on the same agent for the treatment today.  Once again, it’s all about waiting and seeing.  I’ll have my next tumor marker in a month.  If it’s lower or close to the same, I’ll probably stay on the Doxil, because of the mild side effects.  If it’s elevated very much, we have 2 options left:  an oral chemo or an IV one (through my port), both of which have much worse side effects. 

I leave Saturday to visit my mother & sister for about 10 days.  Hopefully, the side effects will remain mild. One of my biggest challenges at this point is to try and get my weight up, which has continued to go down.

Paul and I are a little discouraged, as you might imagine.  We just keep telling ourselves how lucky we are and what a great life we have.  That’s about the best we can do.  After all, the sun will come up tomorrow ...

Love you all,

Nyshie