feeling better...

Hi all,

Mom had a rough night but she is feeling better today. She's still a little puffy but definitely better than last night. She is going in for IV fluids tomorrow and then she will have more chemo next week, but not the carboplatin.

A special thanks to our family friend Ann Young for being with Nyshie yesterday!!!

Maggie

from Maggie...

Hi all,

Mom had a pretty rough day. Her red blood count and platelets were back to normal so they deemed her healthy enough for round #5 of chemo. One of the chemo drugs, carboplatin, can cause allergic reactions after a period of time with no reaction. During round #4 she had a mild reaction, mostly itching and throat swelling, so they pushed it slower today through the IV. Unfortunately it didn't matter and she had a severe allergic reaction. She had red hives over most over her body and was unrecognizable. They put oxygen on her and pushed 3 IV steroids. They kept her at the hospital for awhile and there was some talk of keeping her overnight but I guess they decided she was okay. So, no more carboplatin for her. She is home tonight but feeling horrible, from steroids or chemo or both. She will have the second chemo drug next week and her doc will have to shift the game plan for round #6.

She's definitely not up for calls tonight, not sure about tomorrow??? I'll post tomorrow and let everyone know how she is doing.

Maggie

Fly Siblings in October

from Mom ...

A day to remember ...

Pearl Harbor day and also another day for me to remember. I was diagnosed on this date exactly 3 years ago with ovarian cancer. How much this has changed our lives.
Just a brief update tonight. I had labs last Friday morning, followed by transfusions of 2 units of red blood plus platelets. Thankfully, my good friend Lee Balick was here to keep me company, play cards and nap, as it took all day. Had labs rechecked yesterday and today went in expecting to do chemo, but alas, my blood levels were still too low, so it is postponed until next week. You would think I’d be ecstatic about having another week off, but prolonging this process is nothing to be excited about. It makes it impossible to plan ahead for anything. The good news is my CA125 has dropped from 10 to 6, which is the lowest it’s been in years. The chemo is definitely kicking ass!

Well, time to pull up my boot straps, stop feeling sorry for myself and start dancing. Tis the season, right?

Love you all,
Nyshie

News from BGGN...

Whew! Glad I made it past the last one. The blood transfusions I had last Thursday took a while to kick in, but I have been feeling much better for the last few days. I had an interesting visit with the wizard on Wednesday for my fourth round of chemo. The first medicine was infused with no problem, but within about 10 minutes of starting the carboplatin I began to experience a fairly serious allergic reaction: throat itching and swelling, hands and feet itching. They stopped the infusion and gave me IV Benadryl and a steroid, which eventually calmed it down. Needless to say, I didn’t receive the remainder of the chemo. I think the IV was running too fast, as I’d had a similar reaction 3 years ago.

Anyway, I’m good to go now. Feeling pretty sassy today, but getting prepared for sinking down into that black hole again probably by morning.

By the way, sorry about the gloom and doom of my previous posting. I suppose there are good days and there are bad days and that was one of those days.

Love you all,
Nyshie

from Mom...

You just never know ...

I thought this was going to be my “good week” for the month and it has definitely turned out not to be. The chemo last Thursday once again kicked my butt and I spent the next 5 days, a good part of the time, in bed and/or going down to the hospital to get extra IV fluids and electrolytes for dehydration. Started to feel better Tuesday, although still extremely weak and dizzy (more so than usual). Found out yesterday that my red blood count was low enough that I had to go in today for blood transfusions. That should definitely put me back in the pink, until Wednesday when I have my next chemo.

I keep telling myself how lucky I am to have such a great response to chemo and all of the other reasons I’m so "lucky." Some days it’s just harder than others.

Love you all,
Nyshie

from BGGN....

And, the good news just keeps on coming. First of all, I STILL have my hair! No idea if or when it will start coming out. As you remember, my CA125 was 92 prior to starting chemo. After one treatment, it came down to 44 and after my last treatment, it came down to 13! I have my third treatment tomorrow, so we fully expect this trend to continue. I asked my oncologist yesterday if it drops even lower, could I just skip the last 3 chemos, but no such luck, for a variety of reasons. (Faster reoccurrence time and shorter overall survival time)
There seems to be no consistent good day/bad day pattern after the chemo, so I’m just trying to make the best of the good days. Enjoying the beautiful fall weather, the grandchildren (the joy of my life) and friends and family.

Love you all,
Big Giant Grandma Nyshie

from BGGN ...

Hello,

I can’t even begin to give you all an update without first taking a minute to say thank you to each and every one of you. You have no idea how much love and support we receive on a daily basis in the forms of emails, cards, visits, food, calls, etc. I wish I could call each of you and thank you personally, but the list would be a little long: my dear Fly Family; our children; our Seymour family; my other “Miller” family; our Colorado family; our Utah family; our Delaware, Florida, Mississippi, Seattle, Santa Fe families and Brussels and who knows who I’m forgetting.
We simply couldn’t do it without you!

We just returned from 6 days in Seattle/Port Townsend, where my brother Hank got married. It was such an incredible trip, fly-fishing, hiking, sailing, lots of wonderful seafood and perfect weather.





Back to reality. Had my full-dose chemo Friday morning and the wizard must have put something different in there. The bad chemo day hit me as soon as I returned home and continued through most of the weekend. I was expecting my usual 48 hours of feeling great before it hit me. Should be much better within the next few days.

From a very special card:
“There are two ways to journey through life. You can march…or you can dance.”
Think I’ll dance …

Love,
Big Giant Grandma Nyshie

Some good news...

Hi all,

Maggie here. Nysh and Paul are in Washington state for Nyshie's brother's wedding. She got some good news today. She is having lab work done weekly and they rechecked her CA125 this week. Before she started chemo it was 92 and this week it is 44! This means that her tumors are responding to the chemo and the effectiveness is apparent after just one treatment. She and Paul return next week and she will have chemo again. So, this is her "break." She was hiking today and sailing tonight and sounded wonderful. She's so happy that she could make this trip!!!

Loving,
Maggie

from BGGN...

Well, I’ll be d….. After a couple of semi-rough days, fatigue, a little nausea, and body aches … today is Day 5 post-chemo and I feel great!! Did a fast walk with Paul and Kathleen about 1 ½ miles down our road this am. Helped Paul load a trailer and tractor onto the back of the truck. Played with Vivian and Nyshie for awhile. I’m actually going to force myself to go lie down for a bit, but still just feel amazingly well.

Chemo again on Wednesday, but only a partial dose, so hopefully an even easier weekend than last. Then I’m off for two weeks and start the process again. The chemo is supposed to be cumulative so we’ll have to wait and see how this all progresses, but what the hell…

I’m feelin’ sassy now!!!

Love,
Big Giant Grandma Nysh

from BGGN....

from this am......

Well, after 2 and ½ years, I'm off to see the Wizard. I should have 48 hours of dancing energy before the fatigue hits. Will do an update over the weekend, but I'm fully anticipating to breeze through this over the next 5 months. Thanks for all of the love and support.

Love you all,
Big Giant Grandma Nyshie


Picture from a wild gallery in Santa Fe.
Paul and I had a great weekend!

... with the girls

from Nysh...

I’m a little weary of this subject at this point (as I’m sure all of you are) to go into many details. Suffice it to say that I met with my oncologist yesterday and the plan is to start chemo on September 15th. It will be a different combination of chemo agents with a slightly different schedule but will run into the first of January. They have assured me it will not be as rough as my last experience, extreme fatigue and hair loss, but not the nausea (we’ll see). I still plan on going to Mississippi for my mother’s 95th birthday this weekend, but will only be able to stay a week. And I still plan on going to Seattle in October. Otherwise, life goes on…

Nyshie

Maggie & Ben here...

Hi all,

Nyshie met with her radiation oncologist today to go over results of the PET scan that she had on Monday. They found two more tumors in addition to the one in the lymph node near her lung. One is in her pelvic cavity and the other, which is 4 cm, is above her spleen. So, unfortunately, she will have to start chemo fairly quickly. She and Paul headed out of town today for a little R & R, camping, fishing, etc. She will meet with her OB/Gyn oncologist on Tuesday to schedule treatment.

I'm sure she will do an update next week once she has more information. Nyshie is doing pretty well, looking at this as another difficult time in the long course of her treatment.

Loving,
Maggie & Ben

Holding pattern…

As timing would have it, both my oncologist and my radiation oncologist left for 10 day vacations last Thursday, which is putting everything on hold for a bit. Based on conversations with them before they left (and thanks to my friend Gerry Lee), I have decided to get a PET scan, hopefully next week. This will show if the cancer has spread to any other lymph nodes outside of my chest/abdomen/pelvis. If so, chemotherapy might be the treatment of choice (not my choice). I don’t have an appt. with them until the 26th so I won’t know anything until then (unless I can bribe the PET scan tech to give me some info). Anyway, I will keep you all posted.

Love,
Big Giant Grandma Nyshie

Taking the summer off…

I’ve been following the doctor’s orders and really enjoying the summer. Spent two weeks on the Mississippi Gulf coast for my family reunion and scattering Henry’s ashes on the beach. And no, at that point, there was no oil on the beach there. We ate shrimp/crab/oyster po-boys the entire time. What’s the worst that could happen? It could give me cancer???







Paul and I had an awesome trip to Jackson Hole over the 4th to see Eric and Jess. Beautiful weather, but lousy fishing. AAHHHH, the Tetons!







Then off to Florida unexpectedly to help Chad and Maggie adopt the new “Baby Nyshie”. Wonderful week being Vivian’s nanny.





And just when I thought my life couldn’t get any better, up pops that nasty “C” word again. Briefly, my CA125 has increased from 36 to 79 as of Friday. A CT scan done this past Sunday (don’t ask) revealed no new tumor growth in my abdomen or pelvis, but one stinkin’ lymph node in my chest is enlarged. Saw the doc today and he’s 99 % certain it’s the “return of the ovarian”. I will most likely have a needle biopsy within the next week and hopefully we can zap it with standard radiation or the cyber knife. We’re still waiting to hear back from the insurance company about my appeal of their denial of the cyber knife treatment. I will post more timely updates as new information is available.

The road goes on forever and the party never ends…

Love you all,
Big Giant Nysh

Trip with Ben............

What a trip! Over Vail pass in a snowstorm and down in to 82 degrees in the desert in Moab. Hiking through Arches and Canyonlands, camping next to the Colorado River. Dropped Ben off at Osage Gardens for the summer and home for the next adventure.

Love you all,
Big Giant Nysh

Happy Dance!

From Thursday;

Just got home from the oncologist. My CT scan is NORMAL!!!! What this means is that the cancer is returning but very slowly and too small to show up on the CT scan yet. What this also means is that I get to take summer off, no blood tests (will have it rechecked in late July or August), no chemo, no nothing! Happy times for the summer!!!

I am so lucky!!

Love you all,
Nyshie

from Nysh...

Alas, the news is in. My latest CA125 has increased from 21 last month to above normal 36 this week. I’ll be seeing the oncologist next week, probably a CT scan within the next couple of weeks and then we’ll know what and where we’re dealing with. As I mentioned before the options will be chemo (agh!), abdominal surgery (double-agh!) or radiation/cyberknife (Paul, which organ have you decided on?)

But hey, life goes on. I feel great, a little fat and sassy and as they say, “it’s hell to get old, but better than the alternative.” If my mother, at the age of 94 who is blind and uses a walker full-time, can still go to the gym and ride a bicycle for 30 minutes three times a week, who am I to whine about anything?

My life is awesome!

Love you all,
Big Giant Nysh

The Granddaughters

A picture from our Spring Festival brunch!

“Life isn’t the way it’s supposed to be…”

Ah well, here we go again. Just got the results of my CA125 that I had drawn on Tuesday and it has gone from a very, comfortable “9” to a concerning “21.” Remember, anything under 35 is considered “normal” but it has been such an accurate barometer of what my cancer is doing in the past, we are fairly certain it is returning. The oncologist wants me to chill out (easy for him) and have it rechecked in a month just to be certain it isn’t a fluke. If it’s still going up at that time, I’ll get a CT scan and go from there, depending on the results.

One of the most concerning aspects of this is that my insurance company denied approval of the cyber knife procedure, which I had in October. This could potentially significantly limit my treatment options in the future. We are planning a well-coordinated appeal, time will tell. If not, Paul has agreed to sell an organ ... depending on which one.

As I told Paul tonight, my life is still better than most of the people living on this earth. That’s what I have to hang on to entering the next phase of this “adventure.” Will keep you all posted.

Love you all,
Nyshie

from Nyshie...

Hello,

This update is a mixture of joy and sadness. After a very brief time in bed because of a stroke, my father, Henry, passed away on December 20th at the age of 95. With great thanks to my sister, Liz, he was able to remain at home in his own bed, with my mother at his side and his dog in the bed with him. I can not express in words the incredible impact he had on my life, my children and the world he came in contact with. Simply said, his void will never be filled nor will he ever be forgotten. I love you Henry.

On the other side of my life, my latest CA125 was down to 9 from the previous 11. My new oncologist said the cyber knife apparently obliterated the two small tumors and nothing else has grown enough to pick up with the blood work or on a CT scan. The new game plan: CA125 in 3 months and trying to enjoy life without cancer for the moment. As my daughter Maggie quoted, “Cancer is a word, not a sentence.”

Love,
Nyshie