2008-The year in pictures...

Miss Ila (5 mos.)


Miss Vivian (2)


Paul


Danny, Beth & Ila


Matt


Ben


Eric & Jess


Fly cousins
Lil' Nysh, Shane, Maggie, Kiernan, Ben, Yuki, Miki & Robert


Hank, Liz (Betty), Lu, Nysh & Gene


Ben, Vivian, Nyshie & Maggie


Grandpa Paul & Baby Ila


Ila


Maggie & Vivian


Chad & Vivian

Nysh all good...

Hello all,

She just called me and her December test is great. Her CA125 is 8.2, all is fabulous!!!

Happy Holidays!
Love,
Maggie

More news from Nysh...

Hello,

I know it’s been awhile since my last update. No news is good news, right? Right. My 6 month post-chemo labs done over a week ago were all completely normal. My CA125was 8.2, well within the normal range. They’ll be done again December 17th, so will try and do a more timely update after that.

My other news is that I’m starting a very part-time nursing job tomorrow. I’d been thinking about it for some time, not sure if I could find anything without having recent clinical experience. I’ll be doing supervisory home visits for CNAs providing services for children under 18 with developmental disabilities. Lots of Downs, Cerebral Palsy, etc. The state requires a visit every 2 weeks just to ensure that the CNAs, PT, OT and/or Speech therapists are following the established treatment plan and a brief physical assessment of the child. I make my own schedule and can take as many or as few clients as I want. I’m starting out with 7 and can increase the number when and if I want to. The office is about a mile away (as the crow flies) and the two nurses who own and run it are great. Most of the clients live in our part of town. I’m really excited about it. I have the impression that a monkey could do this, but the state requires an RN (go figure). It’s a great way for me to get back into working away from home and something in healthcare. I’m just going to take it one step at a time. It sort of feels like my first step back into a normal (?) life. It’s been a long year…

Love you all,

Nyshie

More Good News from Nysh...

A very delayed update but I think most of you are aware that my 5 month post-chemo lab work was all completely normal, including my CA125. I will continue to have it checked monthly for awhile. My hair and my strength continue to come back, although my hair at this point looks a little like Lyle Lovett: thick and curly on the top and not much on the sides. I’m just happy to have hair, but with cold weather finally here, I think I’ll still need a hat quite a bit.

Otherwise, life is good. The elections are over, the Peak has snow and we currently all are in good health. Now that’s something to be thankful for.

Love,
Nyshie

more from the Dysh...

I saw the oncologist last Wednesday and all of my blood work was completely normal. My CA125 is 7.3, the same as last month and definitely within normal limits. I feel great, my strength and energy are coming back much faster than I had anticipated, so are my weight and my hair.

My dear friend, Kathleen, sent me this story, which I can definitely relate to. Just had to share it with all of you.


There once was a woman who woke up one morning,
looked in the mirror,and noticed she had only three hairs on her head.
'Well,' she said, 'I think I'll braid my hair today.'
So she did and she had a wonderful day. The next day she woke up,
looked in the mirror and saw that she had only two hairs on her head.
'H-M-M,' she said, 'I think I'll part my hair down the middle today.'
So she did and she had a grand day. The next day she woke up,
looked in the mirror and noticed that she had only one hair on her head.
'Well,' she said, 'today I'm going to wear my hair in a pony tail.'
So she did, and she had a fun, fun day. The next day she woke up,
looked in the mirror and noticed that there wasn't a single hair on her head.
'YAY!' she exclaimed. 'I don't have to fix my hair today!'
Attitude is everything.
Be kinder than necessary, for everyone you meet is fighting some kind of battle.
Live simply,
Love generously,
Care deeply,
Speak kindly.......
Life isn't about waiting for the storm to pass...
It's about learning to dance in the rain.



I have the best life ever and I'm dancing as fast as I can.

Love,
Nyshie

with Vivian (please note extremely sassy hair on the Grandma)




nice rack...

Nysh dishes..........

Paul and I just spent a wonderful weekend at Red Feather Lakes, North of Ft. Collins. Big Al's brother, Dean, owns a cabin there and generously let us stay there for the long weekend. The weather was perfect, the cabin lovely with beautiful views. My strength has come back enough for a great day of fly fishing with yummy fresh trout, which we caught for dinner. My next bloodwork is September 24th, so will put an update on the blog after that.

Also, my parents and sister returned home after evacuating to find no damage to either home, so all is well with them following Gustov.

Life is Great!!!

Love you all,

Nyshie

Fabulous News from Nysh!!!

WaaaaaHoooo! My CA125 from this past Wednesday is 7.2 (last month is was 8.2), my CT scan is perfectly normal and my red and white blood counts are slowly coming up.

YYEEAAHHH!!!!

Love,
Big Nysh

from Nysh....

Well, good news all the way around. My last CA-125 was 7.7, last month it was 8.6. I guess the bottom line is that the chemo definitely worked. The question now is will the cancer come back without the chemo. I’ll be having the blood test monthly for awhile and probably a CT scan in the fall. My energy is definitely coming back, and so is my hair … hoorraayy!!! (photo to follow soon) I’ve started a Buddhist meditation class, trying very hard to just focus on, and appreciate, “today” and not worry about what might happen tomorrow. I'm also working with an acupuncturist and a naturopath for healing and nutrition.

The other good news is that we have a new granddaughter. Beth delivered Ila Ann Karpel Sunday evening around 8:30 pm. She weighed in at 8.5 lbs., has a head of dark hair and is nursing like a champ. Nothing like a new baby to change your perspective about life.

Love you all,

Nyshie (aka Grandma Nysh)

from BGN...

Hello all,

Long time, no update.

My 6th and last chemo treatment was 4 weeks ago (hopefully). As usual, I had a fairly rough 7-10 days following it, but was able to fly down and see my parents and my sister in Mississippi. My parents have both suffered bad falls within the last 2 months and I really needed to go see them. Once again, my heartfelt thanks to our sister, Liz, for caring for them so wonderfully.

I saw the oncologist yesterday and had my usual routine blood work, which was all essentially normal. Red and white cell counts a little low, but no big deal. I won’t have the results of my CA125 (the cancer indicator) until Monday. The oncologist said it probably won’t have been long enough from the last chemo for it to show much change. I think I’m repeating myself here, but I’ll be having it checked monthly for awhile and as long as the number stays low, it’s an indication that the cancer is gone. If it starts coming back up, it means that the surgery and the chemo did not kill it and I’ll start back on the chemo, probably indefinitely, adjusting the dose up or down depending on the CA125 numbers. My oncologist did offer that I could stay on one of the chemo drugs (the worst one) for 12 more months and delay the recurrence for that 12 months (IF it is going to recur at all). I politely declined (Are you out of your #%^&@*&^%$ mind?). I need a break, Paul needs a break, our kids need a break, we all need a break!

On a positive note, I am starting to feel like my old self again, with the exception of the overwhelming fatigue. Great energy in the morning, but wiped out afternoon and evening. I still don’t have much of an appetite and have not gained any weight back, but coffee is starting to taste good again, so I think the rest will follow. At least I still don’t have to shave and it’s a snap to do my “head.”

As you might imagine, it is a little difficult to get my arms around the fact that I could be walking around with a time bomb in my abdomen, but I’m trying to cope. Hell, we’re all trying to cope with one thing or another, aren’t we? Ben loaned me a wonderful Buddhist meditation book. Right now, I am studying mindful breathing and concentrating on “Metta Bhavana” – Developing Universal Loving Kindness. Of course, you have to start with loving yourself. My body hasn’t been very kind or loving for the last two years, so I’m giving it a shot.

“May I be well,
May I be happy,
May I be free from suffering,
May I make progress.”

If I can pull all of this off, I’ve got it made in the shade!

Love you all,

Nyshie (Big Giant)

Feelin' Good in Mississippi...

Hi all,

Nysh flew down to Mississippi to see her parents and sister. She surprised them, many tears followed. She had Lu's doc run a CBC for her and all is well, no transfusion needed. Aside from a little fatigue she is feeling great and really enjoying the time with her family.

Love,
Maggie

Update from Nysh...

Hello all,

We had an interesting night visitor this week.
I don't think he came up with much as he hasn't been back.





One week after my final chemo and I'm beginning to climb out of the black hole. Much better yesterday and today. I actually went out briefly with Maggie and Vivian, which is always a joy. My follow up blood test yesterday was completely normal and my CA125 has now dropped to 8.2. (Below 35 is normal) I will continue to have the CA125 on a monthly basis for awhile. As long as the numbers stay down, I'm good to go. If it starts going up again, the oncologist said I may need a "maintenance" dose of chemo indefinitely. They don't use the word "cure" with ovarian cancer. It can rear it's ugly head again at any time. There is a 75% chance it will recur within 3 years.

This will all just help me to continue to appreciate each "good" day and who and how much I have in my life.

Love you all,
Nyshie

Update for Round 6

Hi all,

Sorry I haven't updated but there hasn't been much to report. She is really sick and has had general, nasty flu-like stuff going on. She's been in the bed for the majority but nothing too weird going on. She is having her blood checked in a couple days and will possibly need a transfusion.

That's all for now.
Thanks and love,
Maggie

Round 6

Hello,

I just spent a wonderful weekend with my other family, the Millers in Ft. Collins. The photo is with sweet Uncle Herb and his son Steve. Yes, I’m the hulking one in the middle! I am so lucky to still have the Millers in my life as well as the Seymour clan and my own incredible Fly/McDowell family.



One more chemo to go tomorrow. After that I will have blood levels drawn for the CA125 on a monthly basis for some time. According to my oncologist, it is more sensitive than a scan would be. I will probably have another CT scan in the fall as a follow up to the mucocele tumor I had 2 and ½ years ago. What a journey this has been. I guess that’s one word for it. I still can’t believe all of the continued love and support that I receive every day from friends and family. I feel like this has been a community effort. You’ve all been there with me, Paul and the kids from the beginning. I do think often of the simple acts of kindness: the soup, the visits, the foot rubs, the calls, the emails, the love…We could not have made it without each and every one of you.


“Sometimes when we are generous in small, barely detectable ways it can change someone else's life forever.”


Love you all,

Nyshie (aka Big Giant)

Nysh the Dish!

Who else could look this smokin' hot at 57, after 5 rounds of chemotherapy and BALD?

That's right, Nysh the Dish!

Monday-update from Nysh...

Hello,

I seem to be recuperating from my last chemo very slowly, but thankfully no hospital admission this round. Fatigue is the biggest problem still, but I’m also having light headedness and very low blood pressure, even for me. I was supposed to have a CBC on Thursday, but moved it up to tomorrow. I’m guessing my red blood count is in the toilet. If so, I’ll get transfused at the hospital, perhaps Wednesday or Thursday. That should get me up and going again.

Hope everyone is enjoying this balmy weather!

Love,

Nyshie

Thursday p.m.

Hi,

She is doing okay. Yesterday was a really good day, she went for a walk and grabbed a quick bite of lunch with me and Vivian and met Paul's sister Janet for dinner! Today, not so good. She's felt pretty crummy and has spent most of the day in the bed. Just general stuff though, nothing horrific this time. She should be feeling much better this weekend, just in time for the 80 degree weather!

Love,
Maggie

Monday

Hi all,

Well, she started having the epigastric pain again today, however milder than previous treatments. She stayed on top of all symptoms with pain meds, anti-nausea and the anti-spasmodic. So she had a pretty good day, considering. She was able to control everything fairly well and even walked a 1/2 mile down their dirt road!

Mega fatigue and symptoms are kicking now she just told me. So, she's medicating and heading to bed.

Thanks and love ya'll,
Maggie

Happy Mother's Day BG Nysh!

Pictures from this a.m. Mother's Day was fairly subdued. We just visited on the patio. She's hanging in, fairly sick. She hasn't had any of the epigastric pain, so far, just the usual fluish symptoms. She does teeter on fainting constantly and the fatigue is brutal.

Matching Trainwrecks-see t-shirts


Mamaw Nysh, Mama & Vivan


Grandpa Paul & Vivian

Round 5

Well, I had my 5th chemo treatment today with no side effects as of tonight. It usually takes 36 to 48 hours for the yucky part to hit. I’ll have my Newlasta shot Saturday morning and blood work in 1 week to see if I need red blood cell transfusions prior to the next, and may I add, LAST FRIGGIN’ chemo treatment. I probably won’t be checking emails much in the coming days, but know that I love you all.

As Maggie quoted on one of the cards she sent me: “Cancer is a word, not a sentence.”

Nyshie

from Nysh...

Thought I would let everyone know that I’m recuperating well after my last go around with chemo. I still occasionally have the same epigastric pain that sent me to the hospital last time, but not nearly as severe. It just doesn’t seem to correlate with how my lower intestines are functioning, so I think it’s my old reflux.

Anyway, life is good. Have been taking some great walks and hanging out with Vivian and the kids. I’m going to my physical therapy class this afternoon. I wasn’t able to go to the first two classes because of the chemo. I still haven’t put on any weight, but I’m sure that will change after I finish chemo. Not sure how long it takes for the hair to grow back?

Four down and two more to go!!!

Love you all,

Nyshie

Hi all

Nysh went home last night after the transfusion. She's doing okay, chemo. side effects still kicking but she's eating, thank you marinol, and going for walks!

That's all for now.
Thanks for the love!
M.

Tuesday

Hello,

She is feeling better today. Her red blood count/hemoglobin is low though, so she is currently having another transfusion. The plan is for her to head home this evening if everything stays on track.

Love,
M.

Info.

The doc said that she had a partial intestinal blockage in her small intestine. Because they removed so much of her large intestine, and chemo. halts her digestive processes, things were not working and that is what was causing the horrific pain. She is going to stay in the hospital again tonight but everything is looking okay.

Thanks,
M.

Monday

Hi,

Well, I don't really have any news so far. She had a chest x-ray last night and an ultrasound this morning and I'm still waiting to hear from Paul if the doc has come by to reveal any results. She feels fairly crummy but her pain is a bit better.

I'll post as soon as I hear from Paul.

Love,
M.

evening update...

I just got home from the hospital. Saw the doc, he said this is all a result of her having a bad reaction to the particular chemo. drugs. Insert sarcastic "DUH" here! She is on heavy pain meds, feeling okay, humor is still intact. They're doing an ultrasound tonight to rule out anything else. The plan is to wean her off the IV pain meds tomorrow, as her pain tolerance allows and then she can head home.

The on-call doc said that she will probably need to adjust/change her chemo. protocol for rounds 5 and 6 b/c her reaction has been so horrible. I don't really know what all that means.

I'll post tomorrow.
M.

ER again...

Paul is taking Nysh to the hospital as I type. She had round 4 on Wednesday, things had been okay. She had fatigue and bone pain, fairly normal stuff. Then in the middle of the night the really painful gastric pain started again. This morning was horrific and she just fainted and vomited. So, they're on their way to the ER at Memorial. I'll post as soon as I know anything.

Thanks,
Maggie

from Nysh...

Just a quick note before I have my 4th chemo treatment tomorrow.

A few weeks ago I had genetic testing done to determine if I carry a gene for ovarian cancer or if it is just random that I got it. If it had been positive Maggie, my sister and my nieces would have needed to have similar testing done with a consideration of having their ovaries removed prophylactically. I just spoke with the geneticist and it was negative, which means the Fly girls are just fine and can rest easy at least from my gene pool standpoint.

Yesterday was my 57th birthday (yes, I know, hard to believe) and I have to say it was one of the most incredible birthdays I’ve ever had in my life.

It started with a wonderful lunch on Saturday with very special friends, followed by a gourmet meal at Beth and Danny’s on Sunday evening with Maggie, Chad, Vivian, Ben and Paul. Yesterday was a perfect, sunny Colorado day. Maggie treated me to a morning pedicure (which included a glass of wine) and a delightful lunch at the Broadmoor Hotel. In the afternoon Ben treated me to an amazing golf lesson and hitting a bucket of balls at our favorite course. I had loving calls and emails all day from friends and family. Sweet Paul treated me to some of my favorite foods for dinner: artichokes and lobster. From our patio, we watched the sunset over Pikes Peak and I felt like the luckiest woman in the world. What more could I ask for?

I love you all,

Nyshie

General update

Hi all,

Nysh has been home since Thursday night, resting and recovering. She has mostly felt fatigue but was able to get out of the house today.

Nysh and Ben are planning a garden and she's had two visits with Miss Vivian, so, she's getting there.

Thanks for everything ya'll!

Love,
Maggie

Thursday update

Good news, her ultrasound is normal. They are assuming that the bleeding is in the bowel dept., but they don't want to put her through anything else (colonoscopy) since she's still recovering from chemo. The bleeding appears to be insignificant and they're attributing the blood loss, her hematocrit is 24 today, as a result of the chemo. So, she's going to get a transfusion, two bags, and then go home this evening!!!

She's in good spirits, no more diagnostics or surgery, and totally ready to go home!

Love,
M.

More tests...

Well, the catscan came back normal yesterday and the endoscopy came back normal today. So, they're still trying to determine the site of the bleeding. She is going to have an ultrasound this afternoon to rule out her gallbladder. If the ultrasound is normal they will do a colonoscopy, probably tomorrow, to check for bowel perforations.

She is at Penrose Main, rm. 1123.

Love,
M.

Ugh-3, some good news

The catscan looked great and there are no tumors!

However, she is definitely bleeding from somewhere and it is most likely gastric. They will do an endoscopy in the morning and hopefully get that figured out. She sounds really good, she's comfortable and not in any pain.

I'll post again tomorrow.
M.

Ugh-2

I have a little more information. Nysh's hematocrit is low, 30 instead of 38. She is going to be admitted to Penrose Main and she is currently doing the prep. for the catscan which she will have today. The scope won't be performed until tomorrow.

That's all for now.
Love,
M.

Ugh!

Nysh is at the hospital. She's had really bad gastric/reflux pain for the last two days. They found blood in her stool, an indicator for a gastric bleed. They'll do a catscan and a scope next. I'll post again later when I have more information but it appears that it is somewhat mild.

M.

Update from Nysh

Good news to report. I saw the urologist in Denver on Tuesday and he removed the stint from my ureter. I’ll skip the details but it wasn’t nearly as bad as I had anticipated and my plumbing seems to be slowly returning to normal.

I had my third round of chemo on Wednesday and the Neulasta shot Friday morning so I’m anticipating a quiet next 4-5 days hopefully with less side effects than I experienced last time. That’s three down and three to go. If I stay on schedule, my last chemo will be May 28th and hopefully we’ll be able to celebrate. I’ll keep you posted. Thanks again for all of the continued love and support.

Nyshie


PS Nysh had a recent CA-125 test and it was 18!! Fabulous and normal.

The Goddesses!

Standing-Jodi, Ginny, Mary Lou & Ellen
Sitting-Nyshie (in photo), Gayle & Susan (in photo)

Update from Nysh

Well, it’s officially springtime in the Rockies: chilly with snow on the ground this morning and it will be 65 and sunny tomorrow. Before I have my next round of chemo. on Wednesday I thought I would give you a brief update.

I have gradually been approaching what I would say is a return to feeling normal the further I get away from my last chemo. I’m still weak and need to rest frequently during the day but I have been trying to walk a mile or so down our road when the weather permits and riding the stationary bicycle when it’s cold. Also, I have really enjoyed some social outings having lunch and dinner with family and/or friends and finally have even worn my wig a few times. Paul and Ben are getting used to the Yule Brenner look around the house. Our local paper has a feature story today about a rehabilitation, exercise program at a local hospital that is specifically designed to help individuals who are going through chemo. I’m planning on starting that this week if possible.

Someone sent me a great quote, perhaps Maggie, that I think is worth sharing:

“Life is not the way it’s supposed to be.
It’s the way it is.
The way you cope with it is what makes the difference.”

I am trying everyday to get my arms around this situation and cope with it in a way that is healthy and helpful, not just for me, but for Paul, the kids and everyone involved. I am trying not to think about my prognosis or outcome, but instead think of today and how blessed I am to have so much love and support in my life. Some days are more difficult than others, but I try to remember, I only have today for sure so I should make the best out of it. I love you all.

Nyshie

The Graves Family

Chris, Tanya, Megan, Melinda, Carl, Mary Evelyn, Jason and Brinkley!

Robert, Kieko & Amika!

"Posing as cancer fighting superheroes!"

Kim!

Update

Hi all,

She is climbing back up! She's still relying on the anti-nausea and pain meds. but she's been able to get out of bed and do some things. Spirits are picking up!!!!

In regards to all of the wonderful meals that have been brought over, thank you! Their freezer and fridge are full. Nysh is eating such small portions and Paul and Ben can only do so much damage. A break in meal delivery would be great so that they can catch up and again, thank you so much for all of the love via cooking!

Maggie

Update

Hi,

The last two days have been fairly crummy for Nysh. The combination of side effects from the chemo. and from the neulasta shot (to increase wbc production) have kept her in the bed. She's had lots of body/bone pain and a severe headache. Spirits go up and down but she's hanging in.

Love,
Maggie

Maddy!

From Nysh;

Hooray!!! At least, so far so good. I had my second course of chemo yesterday afternoon with no appreciable side effects yet! Both of the drugs, Taxol and Carboplaten were infused through my IV port over a 4 hour period. No more of that nasty intra-abdominal for me. I added a very potent anti-nausea drug for two days and I'm sticking with the marinol, so something is working. I go in tomorrow for a Neulasta shot, which is supposed to increase my bone marrow production of white blood cells (which the chemo destroys). Not sure what the plan is for decreased red blood cell count. Last time I had transfusions. Anyway, my next scheduled chemo is in 21 days, assuming that my blood counts are high enough then.

The only other issue is in late January, my CA 125 was 64 (normal is below 35) and at the end of February, it was 69. The doc said lots of things can make it vary a “little” like this, such as the chemo, the peritonitis, but we will keep a close watch on it.

Otherwise, I’m still trying to stop losing weight, eating much better and more often. Riding the stationary bike every day, walking down the road when the weather allows. Just trying to get beyond this weakness and enjoy every day that I have. Thanks for the continued love and support!!!

Nyshie

Round 2

Hi,

Nysh had round 2 of chemo. yesterday. She had IV taxol and carboplatin over four+ hours at the cancer center, no hospitals this time. So far she is feeling okay. A little fatigue and she is staying on top of the nausea with the meds. I'll post an update from her soon!

This picture is from last night, she stopped by to see Vivian after chemo.

Love,
Maggie

The Latest From BGN...

Hello,

I went to see the oncologist this past Friday. It was supposed to be a “chemo” day, but he took one look at me and felt I was just too “puny” to do the chemo. He firmly told me to take the Marinol (pot) pills every day, start eating, get stronger and we would start the chemo next Wednesday, no matter what.

I followed his advice, have been eating much more, walking when the weather permits, 20 minutes on the stationary bicycle (with Paul standing over me with a whip) and all in all, I feel 100% better. I’m ready to face this chemo monster, which I’ve been dreading after the first go around. My mother said if I become a pot-head, it’s ok, as long as I eat!

By the way, have I mentioned how incredible our kids have been through this? Ben has done extensive research into diet and alternative treatments and hovers over me like a mother hen. Maggie has been there every minute of every day in spirit if not in body and of course, manages the blogsite. Beth and Eric call and check in constantly. Eric even flew down from Jackson for a quick weekend trip. Matt checks in frequently, when school, work and girlfriend allow. And without my sweet Paul, I never would have made it through the last two months.

Will keep you posted on how this round of chemo goes, should be much easier than the last. Love you all.

Nyshie

The General

Although she needs no introduction, for those of you who haven't had the pleasure, meet Lu Fly.

Update

Hi all,

The last week has been relatively mellow considering the last two months. Nysh had one trip to the ER, which thankfully turned out to be nothing. Today she got an epidural in her back to relieve some severe leg pain and she and Paul drove up to Denver to meet with the urologist about removing the catheter. They will meet with the oncologist at the end of the week to discuss the schedule. It looks like the IV chemo. will resume one week from today.

Nysh's mom (Lu), sister (Betty/Liz) and brothers (Gene and Hank) are in town. She's been getting some good "Fly" lovin'. Pictures below...

Love ya'll,
M.

Hey, hey

From Nysh;

At last, I seem to have gathered enough energy to put an update on the blogsite. I can’t tell you how much Paul and I appreciate what everyone has done for us: food, flowers, gifts, etc. I am so fortunate to have so many wonderful people call me “family”, “friend”, “sister", etc.

I was discharged last Thursday from another round of peritoneal infection, as you all know. I have continued the IV antibiotics, which were completed today. Whether it has been the antibiotics, the peritonitis, the intra-peritoneal chemo, or a combination of all of the above, I have spent the last month in a very deep hole and feel that I am only now beginning to climb my way back out. I knew that I had lots of support, but felt that I had to tackle this on my own. I literally have not been up to phone calls or email.

I’ll have the next week off until we meet with our oncologist to hopefully “bulk up” and get mentally prepared for the next round of chemo. I should have 5 more sessions of the chemo, but I'm not certain of the exact schedule.

Well, that’s about the end of email time for today. By the way, this is the best day yet. No nausea, able to eat, walked close to a ½ mile today. Hoorraayy!!!!!

Love you all,

Nyshie (B.G.)

PS Paul shaved my head today!

Hank, Kiernan & Jamey

Saturday Update

Hi,

Well, let's see. Nysh and Paul drove up to Denver to see the urologist on Friday. She had to leave the hospital with the foley catheter in and the doc is not quite sure what is going on. Basically, they decided to leave it in until she is in a better place (no abdominal inflammation or infection) to have some tests run to figure out why she's having some incontinence issues.

After that appt. they drove to the internist's office here in the Springs. She is having IV antibiotics every other day. I think that continues through most of this coming week. Unfortunately, the antibiotics are freakishly strong and have the same side effects list as the chemo. So, she feels like garbage. Pretty bad fatigue and nausea but she is trying to eat more.

Lu (Nysh's Mom aka The General) arrived this evening with Liz/Betty (Nysh's sister). It's been difficult on them to be so far away. I'm sure that's true for a lot of people. The love rally is great for Nysh!!!

Also, Nysh's hair is pretty much gone now. Just as the doc predicted it would be. Her spirits are down right now. She's ready for a little bit of relief.

Love ya'll,
M.

PS Thank you so much for all of the love that keeps flowing in! What an amazing, wonderful support group.

She's Home!

Yea, Nysh went home this afternoon. I don't even know how many days it's been. Ugh! But, thankfully she is home and resting.

Love,
M.

Mark & Mary

Wednesday

Hi,

Nysh is feeling "pretty good!" She hasn't been able to eat for two days, nausea and zero appetite. She's trying to take an anti-nausea pill right before meal times so that she can start to ingest some calories and Ben is encouraging her to drink ginger tea and take some ginger chews, both help with nausea. She's been on two long hallway walks today and they've been switching all IV meds to oral meds to prepare her for heading home. Her fever tends to show up in the evenings but it's staying around 100F and all blood levels are good.

Her main focus is caloric intake! She'll possibly go home tomorrow, maybe the next day.

Love ya'll,
M.

Information

Hi,

Paul and I just had a big phone update so I got some clarification on a couple of things.

One, Paul met with the patient representative at the hospital today to complain about several things. The meeting went really well and she is scheduling a conference between the executives and Paul, he does this with other hospitals as an executive coach. So, the formal complaint list is compiling. If any of you that have been to the hospital, especially Ben and Pat, have very specific things to add please email Paul.

Two, an infectious disease consult met with them today and explained the staph infection. It's a common strain of staph that we all have on the surface of our skin. It would have been introduced into Nysh's abdominal cavity during placement of the port or during the IP chemo. It became a problem when her WBC plummeted. So, now that her WBC is back up and the antibiotics are on board, it should get taken care of.

She still won't go home for another day or two. She's running a fever of 100.4 tonight and is feeling crummy. But, she did feel better this morning. Hopefully that will get longer each day.

Hope the new info. is helpful.
Love,
M.

Monday

Hi,

The last ultrasound showed no fluid in her abdomen, the belly swelling was due to her extremely full bladder. She's been having some incontinence issues so they put the foley catheter back in yesterday and drained like 2500cc. Yikes! So, needless to say she has another appt. with the urologist at the end of the week. The doc said she'll likely be in until the end of the week. They have to get the inflammation and the infection under control. For those of you doing research on the chemical peritonitis they never did find a bowel rupture.

Ben, Vivian & I just went up for a visit. She walked the hall, first time I've seen her up in 10 days, and she was headed for a shower. She's trying to eat more and she's really ready to go home.

I have no idea when they'll start up the chemo. The schedule is obviously thrown off. I'll update when there is more news.

Love,
Maggie

Liz, Henry & Lu (and Sassy)

Saturday

Hi,

The surgery went fine yesterday. They removed the port but there was no fluid around that part of her abdomen, it's in the lower part. The infection is staph, don't know exactly how she got it, most likely from the port. She's STILL feeling like garbage today, mostly resting. Good news, her red and white blood cells are normal. She's having an ultrasound this afternoon and they will likely go in and drain the fluid again.

Paul got in last night and Nysh's nephew Robert just arrived and is headed up to sit with her.

Big Al (Dad) just headed home and I'm off to nap.
Love and more later,
M.

More Surgery

The fluid is back in Nysh's abdomen so she will have surgery today to drain that and to remove the IP port, which is probably the source of the infection. Her blood numbers are up enough for her to have surgery so they're trying to get it scheduled. I'll post when she is out.

Thanks,
Maggie

Wednesday

Hi,

Dad and I just went up to see Mom and she did seem to be feeling a bit better. They drained 4 liters of fluid from her abdomen this morning and they're giving her a pint of blood. Both making a huge difference. However, the fluid from her abdomen appears to be a bacerial infection and so the doc is calling in an internal specialist to figure out the best protocol. She's still on antibiotics, plus all the other stuff. Her WBC is slowly coming up but still a bit danerous. The best though is her attitude and spirits seem better. She even had earrings on when we went to see her! Now we'll just wait and see what they say about the fluid.

I'll update when I know more. My surgery went fine but I'm wiped.

Love,
M.

Monday still...

Well ... shit. Now she has chemical peritonitis. Not surprising considering they pumped all that garbage into her. So, she's on IV antibiotics and still getting the pain meds., anti-nausea and they've doubled the saline to help with the dehydration. Due to that and the low WBC she'll be in until at least Friday. That's what the doc just said. She needs to focus on calories. So, we're trying to hang in.

I've been updating Paul via email in Denmark. I know Nysh will be ready for his arrival on Friday.

Sidenote; I'm having surgery tomorrow. Outpatient, nothing too major. But, I won't be updating the blog until Wednesday, possibly Thursday. So, I'll get online as soon as I can to give you all the latest. For those of you who have emailed me I'm sorry if I don't get back to you until later in the week. Thanks!

Thank you so much for all of the "help" offers, emails, etc.
Love ya'll,
M.

Monday a.m.

Hi,

Well, yesterday afternoon was a little scary as Nysh's fever hit 101, but this a.m. no fever! She is feeling a little bit better today and hopefully will go home tomorrow. Her white blood count is really low, expected, so anyone seeing her needs to be extremely mindful of their health and hand washing. Thank you! It will probably be at least next week before she's ready for visitors. She is wiped!!! Ben and Pat will be with her this week and Paul arrives home on Friday.

Thanks and love,
Maggie

Sunday

Hi all,

She's still in the hospital and not going anywhere. They started her on an IV morphine drip so hopefully that will give her a bit more relief than the other. Also, they started IV magnesium and potassium. No improvement. I wish I had something better to report.

Love,
M.

Saturday

She is staying in the hospital today and will probably go home tomorrow. Doc said it could take another day or two for the cystplatin to clear her system. Still miserable, no improvement. She is trying to eat a little.

Got to run,
M.

Friday-3

Hi,

I spoke with Nysh briefly. The doc said this is due to the IP chemo. blast of cystplatin that they put into her abdomen. She is not going to do any more IP chemo. She will have 2 1/2 weeks off and then resume the IV chemo only, that will be a combination of taxol and carboplatin. She might go home tomorrow, maybe Sunday. She does not have any fever currently, good news, and I'm waiting to hear on her blood levels.

Paul is headed home to pack for his trip to Denmark in the morning and Ben is headed up to the hospital. Mom's great friend Pat Wallace is coming into town tomorrow so she and Ben will be caring for Nysh while Paul is gone.

I can't think of anything else to type that isn't extremely colorful. Aghhhhhhhhhh!

Love,
Maggie

Friday-2

Paul just called and they are transferring Nysh to the hospital. The plan is to keep her on IV-fluids/anti-nausea/pain meds. and send her home in the morning. I don't have any more information right now.

Love ya'll,
M.

Friday

Paul took Nysh to the oncology clinic this morning. They are giving her IV fluids, anti-nausea and I think IV pain meds. There was some talk of putting her back in the hospital, but I'm not sure. Ben and I are waiting to hear from Paul.

That's all I know right now.

Love,
M.

Well...

Things have gone from bad to worse. I've been hesitant to write an update but enough people have called or emailed that I thought I should. The last two days have been horrible for Nysh. She feels beyond awful and can't get out of bed. Today has been even worse than yesterday and we were thinking maybe she would have turned the corner. Symptoms are severe flu-like pain, nausea, and her abdomen is excruciatingly painful.

She and Paul will call the oncologist in the morning to talk about things. Nysh is not feeling like she can do another round of the IP chemo. Especially since the side effects are cumulative and get worse with each cycle. At the moment I don't know what she'll do on Monday and I'm not sure about the schedule, I know some of you are trying to plan visits.

I'll update as I know more.
As always, THANKS for the love!
Maggie

At Home

Hi all,

Nysh went home this morning and is happy to be resting in her own bed. The side effects have kicked in. She feels like she has a REALLY bad flu or was "hit by a mack truck." A few days in bed and hopefully nothing else to report this week. She goes back in on Monday to the oncologist's office for 2-3 hours of IP taxol.

That's all for now.
Thanks for the love!!!
M.

Update

Hello,

She is still doing really well. She's feeling good and the nurses have been fabulous. Her doc came in this evening and told her not to get too cocky because the side effects will kick in more in the next couple days. She is just relieved to have gotten through these last two days and her anxiety is so much better. Her vitals are perfect and the plan is still to go home tomorrow.

Love ya'll,
Maggie

The latest

Hi,

Well, so far so good. All of the IV taxol went in without any complications. They pushed the IP cystplatin this morning, plus about 4 gallons of saline. She's having some abdominal cramping and a little bit of nausea but they're managing with meds really well. Her appetite and spirits are good! She's scheduled to go home sometime tomorrow.

Love,
Maggie

Checking in

Hi,

Just wanted to let everyone know that the procedure this morning to put in the IV line went fine, no problems. Nysh was in really good spirits today. She's ready to get the inevitable started.

Love ya'll,
M.

The New Hair

Nysh, Ben and I went shopping today for Nysh's new wig. No relation to the haircut I gave her a couple of days ago. :)

Pretty cute, check her out!

Love,
Maggie

The Plan

Hi,

I wanted to give everyone the schedule and an information update.

Tomorrow morning, Saturday, Nysh will be admitted to Penrose Hosptial here in Colorado Springs. They'll start a central IV line which will be permanent until she is finished with the chemotherapy.

Day 1-Sunday morning they'll start the IV chemo., taxol, which will run slowly for 24hours.

Day 2-Monday she will have the IP chemo., cystplatin, for 2-3 hours, they'll monitor her, help manage the side effects and she'll go home sometime on Tuesday.

Day 8-On Monday, February 4th she will go in to the oncologist's office for 2-3 hours of more IP chemo., taxol, followed by bloodwork.

After this cycle she will have 21 days off and then she will repeat everything for 5 more cycles, a total of 6.

If anyone has any more questions feel free to email me, manshutz@gmail.com or call, 719.328.1148. Please don't hesitate to contact me this coming week so we can try to give Nysh and Paul's phones a little rest. Also, Nysh has asked that people not come by the hospital for this first cycle, she wants to wait and see how things go.

Thank you all so much for your continued support, love, thoughts, prayers, emails, calls, visits and food! We appreciate it all very much!

Thank you and love,
Maggie

Update

Hi everyone,

Nysh and Paul have been doing a lot of research and have spoken with several oncologists regarding the best protocol for Nysh's treatment. They have made a decision to do the combination IV with the IP (intraperitoneal) chemo. She will treat with the oncologist here in the Springs starting next week.

I'll email when there is more.
Thanks,
Maggie

Nyshie's New Do

Nysh is preparing for her upcoming hair loss with a shorter do.