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

Things are just humming along out here in Colorado. My next CA125 (tumor marker) will be on October 30th followed by chemo on November 1st. I’ll do an update when I have the results. Otherwise, I am recovering very well from the gallbladder episode with only minimal abdominal discomfort these days. Actually, Paul and I went to the gym this a.m. for the first time in months. It felt really good although I was careful not to strain anything of importance.

I wanted to share a couple of photos of our other two, beautiful granddaughters (Beth’s girls), Mae (1) and Ila (4 ).

 

One especially difficult thought for me has been that I wouldn’t be around to see our grandchildren start school. Well, Vivian is now in kindergarden and Ila starts next fall ... I’ll be here for sure!

The human spirit is stronger than anything that can happen to it.   C.C. Scott

Love you all,
Big Giant Grandma Nysh

Brief update from Mom and the latest of the girls!

I continue the slow recovery process from my gallbladder surgery. I’ve been surprised at how painful it still is at times. Some really good news to celebrate: my CA125 went from 291 seven weeks ago to 261 last week. This is not a huge drop, but as my oncologist said, it could have gone up because of the recent surgery and the inflammation that accompanies it, so we’ll take it! I had my fourth round of chemo last week as well with minimal side effects: fatigue and some loss of appetite.

A special thanks to our British friends, Roger and Carol, who came over to visit from France. It was a wonderful week and hopefully, we’ll be going to see them next time around.

Otherwise, all is quiet on the Western Front ...

Love,
Nyshie

from Mom ...

Ok.  I’ve decided I definitely have a target painted on my back.  Feeling good, had a great summer, beautiful fall, just getting started with a visit with my mom and wham ... my gallbladder?  What the …
As you know, the surgery went fine, I was discharged home this past Monday and am starting to see a light at the end of the tunnel.  Saw the surgeon this a.m., who removed the staples and everything looks good so far.  We also saw the oncologist, who recommended that I wait 2 more weeks before resuming chemo. That’s about it for now.

I can be changed by what happens to me. But I refuse to be reduced by it.   -  

Maya Angelou

My Mother Lucretia with baby Nyshie & Vivian

should be home ...........

Hi,

I'm still in Mississippi with the girls, so this will be brief.

Talked to Mom this a.m.  She sounded really good.  In a lot of pain but discharge papers were signed.  She is probably home by now and resting, hopefully.

The girls and I fly home tomorrow so I'll post tomorrow night or Wed.  But, just recovery time now.  They'll be watching her white count closely so she can start chemo relatively soon.



Thanks for all the love,
Maggie

more from Maggie

Hi,

Paul called this morning and said that Mom had turned the corner.  :)

She was feeling better, took a shower, felt like going home, etc.  But, as things tend to go, she changed her mind as the day went on.  I talked to her this afternoon and she was really worn out and still in quite a bit of pain.  The discharge plan is still for Monday.


Night,
M.

from Maggie

I talked to Mom briefly mid-morning.  She sounded okay.  The PT had come by yesterday and got her up in a chair, which she said was beyond brutal.  The dilaudid pain pump had started giving her head aches so they were switching her to morphine.  She sounded a bit blah, understandably. 

I'm in Mississippi with the girls.  Ben flew in too and our cousin Li'l Nysh.  We're having a mini-reunion with my Aunt Liz and Grandma Lu and Mom is supposed to be here with us.  So, instead she is having to deal with all of this.  YUCK!  To say the least .....


I'll try to post more later.

M.

yesterday's news from Paul ...

Sorry all, I was travelling yesterday and didn't get on my computer. 

Here is the update from Paul from yesterday ....

"I left the hospital about 5am this morning (Thursday). She was awake and in her room but in significant pain —“10”. She was in recovery an extended amount of time because they couldn’t get her pain under control but her vitals were stable. The nurses said they weren’t afraid to give her max doses of pain meds so hopefully she will be more comfortable soon. For the last month or so she has “not felt quite right”, has not been hungry, nauseous off and on, and losing weight. We of course, thought it was the chemo, but it was the gall bladder heating up. When we were in MD Anderson they did tell us she had three gall stones but “they are not blocking anything so not to worry.” When we got to the ER last night they ordered multiple tests (many of which she had had the night before in Bay St Louis). Then the surgeon came down and took a look at the black and white Nysh had been given of the CT scan and he cancelled all the tests and said to just move her to pre-op. Young surgeon with a good bed side manner so we were comfortable. The gall bladder was about 5-6 times its normal size so they had to open her up to take it out.—“a big, bloody, infected mess” as he described it. Said there were no surprises and that the tumors he saw were about pea size. I am so glad she was able to get back from MS. I suspect the Dr.s there are happy as well. So, now if we can just avoid the complications. They immediately put her on antibiotics before the surgery hoping to avoid all the infections we have encountered in the past. They did not have a private room on the surgical floor so she has a room-mate who snores so she feels just like home except she is too far away to elbow. The room is very cramped with no place for a guest to sleep so I won’t be crashing there at night. She has a drain in the wound which he said should come out in a couple of days and then home in a couple more if all goes well. As social as she is, she may enjoy the company of a roomy. Nursing staff seemed competent and attentive so I am feeling ok at this point. I am training CCL this week and they are covering for me today. I work half day tomorrow and then am off until next Wed. I may cancel next week depending on how things go. They are just great and say “just go, just go, quit hanging around here.” They are better at kicking me off the job than I am.
I just called her oncologist's office to tell them what is happening and was told she had called first thing this morning to let them know and to cancel and reschedule her chemo for next week. –I think she will be fine.

Came to the hospital around noon (Thursday). She was awake and somewhat alert. Sleeping off and on but seems so less ill than any of the other times she has been in the hospital. Not so frightening this time and her pain is under control although of course she does hurt. Dr. said all looked good. Also, said when he looked at her intestines he can’t believe they work at all. – just a mass of scar tissue.

I will keep you informed and thanks for your support. We all feel very loved and supported by each of you."


Paul

Surgery tonight ...

I just got off the phone with Mom and Paul.  She spiked a fever, they called on-call doc who happens to be her surgeon for planned appt. tomorrow, he sent her to ER.  She is admitted.  Doc looked at scan and surgery is in a couple hours.  The gallbladder is too big to remove by scope so he will have to open her up.  She'll be in 4-5 days.

I'll update first thing in the morning.


M.

more on Mom ...

Just finished talking with Mom.  She is in Dallas, half way home.  Her pain and swelling have settled and the first flight went well.  Paul is picking her up in the Springs some time after 3 pm.  They will meet with the surgeon first thing tomorrow morning.  The scan in Mississippi did show that her gallbladder is 6x normal size.  Ugh!

More when I know ...

M.

A complication of sorts ....

Well, Mom's attempt to gain some weight while in Mississippi seems to have backfired.  After a few days of fried shrimp po-boys & creamy oyster artichoke soup the right side of her abdomen swelled & she went in to the ER this evening.  Gallbladder.  She wants to see if it will settle down, hoping to fly home tomorrow and have the surgery here.  Her post-op history is somewhat muddled with complications, to say the least, so she would prefer to be here than in Bay St. Louis, should anything else arise.


I'll update tomorrow.

Love,
Maggie

Woo-hoo from Mom!

Whew ...


We saw the oncologist yesterday afternoon and my CA125 went from 460 last month to 291. We did a major “happy dance” in the office with tears, as usual. The oncologist, wanting to bring us back to reality, reminded us that my cancer will never be cured and that as the cancer cells mutate, this particular chemo will probably lose its effectiveness. There is simply no way to predict when that might happen. We are just holding on to today and feeling pretty sassy. I felt a little puny last night and today and expect some mild side effects throughout the weekend, but still amazed at how 'easy' this chemo is. The next chemo and CA125 is in a month. Will keep you all posted.

"Cancer does not define me, but how I live and fight with cancer DOES define me."

Love you all,
Big Giant Grandma Nyshie

The waiting game ...

First of all, Happy Birthday to my sweet, beautiful niece, Li'l Nyshie. Hope we can spend one of these together.

I’d like to make this update short and sweet. I saw the doctor on Monday and had my 3rd round of chemo (Lipodox). My CA125 went from 416 last month to 460. The doctor assured us again that this type of chemo can cause an initial increase in the tumor marker, but generally after the 3rd or 4th dose, it will begin to come down or stabilize, if it’s working at all. We’re still in the “wait and see” game. The good news is that I still have had almost no side effects from this chemo, other than a little fatigue. The difficulty is waiting…

Some days there won't be a song in your heart. Sing anyway. ~ Emory Austin

Love you all,
BGGN

Nyshies

from Mom

Nice to be home ...

I flew home from Jackson Friday night with Beth and the girls.  Paul and Danny drove down from Jackson on Saturday. Eerie how normal our house feels, when so many others lost theirs. We drove through part of the burned areas and cried at the devastation of so many neighborhoods and the foothills above. It is abundantly clear that the firefighters saved so many homes, as the burned areas surround the homes, completely in some cases. When I drove out of our Valley on Tuesday afternoon, the 26th, this is what I watched moving towards us:

 
I’m still somewhat shell-shocked from the experience, but settling down a little.

An update on the big “C”. In about 10 days, I will have my CA125 checked again and have my 3rd dose of chemo. Depending on what my tumor marker shows, I may stay on this chemo or switch to the last one in my arsenal. The good news is I have very little side effects, the bad news is we have no idea if it’s working or not.


We are home just long enough to unpack, do laundry, pay bills, weed the garden and repack for Mammoth, CA. We leave this coming Friday, the 13th, for a week at Paul’s annual family reunion.


“There are two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” Albert Einstein


It is a miracle that we have our home.

The miracle is 1,600 firefighters who courageously risked their lives for us.

Love you all,
BGGN

This was taken Wednesday night from the deck on the house where we where staying. I flew home Friday with Beth and the girls. Anxious to get back to the Springs, our "safe" house, our kitty and to connect with friends who were so affected by the fire. Makes me appreciate everything we have.


Love you all,
BGGN

very brief update ...

Just spoke with Mom.  They are having a nice time in Jackson.  Went for a 2 mile hike yesterday, saw a mama moose with her two babies, and enjoying the beauty of the Tetons.  Her shoulder/neck feels great.  She is still planning on getting a massage while there but, really looks like it was a muscle related issue and not the tumor.  Thank goodness!

The fire is 55% contained and there are close to 1600 firefighters working here now.  Amazing!!!  Nysh & Paul's neighborhood is still intact.  Most of the evacuations are lifted now, with the exception of the areas that sadly burned.

Mom's nephew sent out this link, some unbelievable photographs of the wildfires impacting the west.

http://www.boston.com/bigpicture/2012/07/wildfires_in_western_us.html

# 1 - This is the area with the greatest devastation in terms of homes lost.  Chad's cousin lost her home.


#11 - This is a half mile from Mom & Paul's.

#23 - This is what Mom drove out of Tuesday after the fire exploded.
 
 
Thanks again for to all of you for checking in!
 
Love,
Maggie

Brief update ...

Hi all,

Well, Vivian and I met Mom & Janet at the house this morning.  We packed up a few valuables, irreplaceable photographs and a table that Dad (Al) built.  Vivian was slightly confused about the reason we were there.  She thought everything was up for grabs and kept saying, "I want that" and "I want this!"  Silly girl. 

The firefighters have their containment lines in place but said the weather, hot & dry, would test them.  With the smoldering hot spots still so close it makes the most sense to take advantage of the lifted evacuation and move some more things for now.

Paul & Danny left this a.m. for Jackson, WY and Mom is on a plane headed there now.  Beth is already there with her two girls and they'll spend the week with Eric, Jess & Jess's family.  Hopefully, it will be relaxing for everyone after a very difficult week.

Mom's shoulder & neck benefited greatly from the acupuncture.  So, she is either going to have another session while in Jackson or get a massage.

That's all for now.

Love,
Maggie

YAY!

Spoke with Mom about an hour ago, she went to acupuncture this morning and it helped her neck & shoulder tremendously.

And, at 8pm tonight they lifted the mandatory evacuation on their neighborhood.

Never have I loved caller ID so much as when I saw her home land line pop up a half hour ago.  WOW! 

The fire is still burning, of course.  It is 25% contained and there are still some areas on mandatory evacuation.  But, the firefighters are beyond amazing and their massive efforts are starting to turn things.

Mom sounded so great!!
Love to all,
Maggie

First, thank you all for checking in this week!!!



Nysh had a very scary evacuation Tuesday late afternoon. She was home by herself, Paul was at work. The pre-evacuation order had been given and she was packing.  At 4pm a news conference started and by 4:30 it was an emergency, chaotic evacuation.  The fire exploded with 65 mph winds pushing it north/northeast, towards Mom & Paul's.  She said she stepped out on the patio and saw violent flames erupting & moving very quickly.  She grabbed the cat and got in her car.  It was dark as night, "raining ash", people panicking, car accidents, horses running down the roads ... but, she got out.  It probably got within two miles of their house. That explosion, Tuesday afternoon, did burn hundreds of homes near them.  They are just starting to release this information.  So far, their neighborhood seems to be "okay."

They met at Paul's sister's house on the east side of town. Mom was/is extremely emotional. The plan as of Wednesday evening was for Mom, Beth (Paul's daughter), and Beth's two kiddos to fly today to Jackson, WY, a trip planned already for next week. The plan, to visit Paul's son Eric & his wife Jess.  Paul and Beth's husband Danny, were planning on driving up Friday morning.

However, Mom woke up this morning with terrible pain in her right shoulder, neck & arm.  She does have a tumor in her lymph node on that side of her neck and she could not decipher if the pain was related to the tumor or not.  So, she cancelled her trip to WY for today and just called me as she was leaving the doc's office.  He did a physical exam and believes at this time the pain is muscle, soft tissue, etc.  Probably from frantic packing & extreme stress.  He does not think that the tumor is the culprit but they will keep an eye on things.  She and Paul might decide to go to Jackson sometime this weekend, all depends on how she is feeling.

So, for those of you watching the news.  It is very upsetting and emotional to be here.  We all know people who have lost their homes and this fire is very far from containment.  It is nice to see the amazing outpouring of support from the community to help those that have been displaced as well as the firefighters.

I'll update again tomorrow, unless there is anything to report this evening.

Nysh & Paul are going back and forth from Paul's sister's home to Harvey & Mona's (close friends) townhome, both in the Briargate area on the northeast side of town.


Thank you all for the love & support.  There are terrible events happening all over Colorado, and the country.  Sending our love as well ..............

Maggie

I’ll just get right to it. We saw the nurse practitioner in my oncologist’s office yesterday. Unfortunately, after my first round of the new chemo (Lipodox/Doxil) last month, my CA125 (normal is below 35) has increased from 254 to 412. She said it is not uncommon for this type of chemo to increase your tumor marker at first and for it then to start coming down. The other possibility is that it is not going to work at all (like the last one I did). They do want me to have two more doses of this same one (2nd dose yesterday and the next one in a month) before they think about changing it. As I only have one more to try after this one, sounds like a good plan. We are carefully watching the tumors in my lymph nodes in my neck, some of which are now the size of marbles. The other issue is my abdominal incision from December has still not completely closed up. The visiting nurse, Paul or I are still packing it on a daily basis. I may consider a plastic surgeon if this continues.

The good news is that I still feel very well and have continued to have essentially no side effects (other than a little fatigue) from this chemo. We are enjoying the beautiful, although hot weather here in Colorado.

Paul and I continue to try and get our heads and hearts around this situation and remind ourselves everyday how lucky we are. We are doing a volunteer fishing program on Saturday for young hospice patients and their families. We can always find someone less fortunate than we are.

“The way is not in the sky. The way is in the heart.” Buddha

I hold you all close in my heart.

Nyshie

… one day at a time …


It’s been three weeks since my first round with the new chemo and other than a little fatigue, unbelievably, I have had no side effects. My hair is growing back (white and fuzzy at this point), no nausea and no body aches. Paul and I are hoping they didn’t give me a placebo. I’ll have my tumor marker checked in a week and then another round of the chemo. We’re keeping our fingers crossed that this chemo will do more than the last one at managing the tumor growth. If not, I only have one more chemo to try and it doesn’t sound like a fun one. Some days are more difficult than others living with this uncertainty, but hey, I’ve still got an incredible life and so much to be thankful for. Especially, having Peyton Manning as our new Broncos quarterback!  :)

We just spent 4 days in Logan, Utah visiting old and dear friends and are now in Minneapolis with other friends and our business partner. Home for a short while, then up to Jackson Hole for the 4th and then to Northern California for Paul’s annual family reunion at Mammoth Lakes. Whew! I’m tired just thinking about it.

As the saying goes, when life gives you lemons …

Big Giant Grandma Nyshie

super brief .......

Mom had the new chemo regimen yesterday.  So far she is feeling fine, but it's early.


Will update in a couple days.
Love,
Maggie

Fly time in Mississippi .........



Gene (Mom's older brother), Lu & Mom



from Mom ...

The long and the short of it ...

As Paul mentioned in the previous update, we made it to MD Anderson and were a bit overwhelmed by the size of it. We stayed in a hotel owned by the hospital and adjacent to it. They use electric carts (like at the airport) to shuttle patients around. When I had lab work there were at least 40 to 50 people waiting ahead of us. The CT scan was the worst. It took a little over 4 hours from the time we checked in until we walked out, with approximately 60 people in the waiting room.

Most of the staff was very friendly and helpful. We didn’t spend a lot of time with the doctor. Thursday a.m. she reviewed my CT scan, which showed “significant progression of the disease” with most of the tumors (8-10) having doubled in size since December. Labs for the most part were normal. They have one clinical trial for ovarian but for several reasons, I do not meet the criteria, so not an option at this time. She recommended I proceed with the chemo regimen my oncologist here in the Springs wants me to start next week. So, that’s the plan, Sam.

Monday, I have tests to make sure my heart will tolerate this chemo, Tuesday my doc is going to open my incision up once again (which has never healed) and stitch it up. Late Wednesday or Thursday, I’ll have the first round of chemo. The 'good' news about this chemo is that it is given once per month, presumably my hair will grow back (yeah) and the side effects are supposed to be less than the last one I was on.

At least I’m established as a patient at MD Anderson and will continue to use them as a resource. I will be notified of any new clinical trials that come up.

The best news is that our dear friends Gayle and Bruce have 2 tickets to hear Obama’s commencement address at the Air Force Academy on Wednesday and Bruce invited me to go with him! Thanks again so much to the two of you, I’m excited beyond words.

“We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude ... we are in charge of our attitudes.” Charles Swindoll

Love you all,
Nyshie

from Paul ....

(Nysh & Paul arrived in Houston yesterday to spend some time at the MD Anderson Cancer Center.) Saw the Doctor this morning. They are going to look at her tumors to see if there is a clinical trial aimed at her specific tumors. Doing blood work, x-rays, ct scans etc. today and tomorrow. Liked the Doctor, this place is really great as well. Very caring and helpful. Nysh is getting a free Mary Kay makeover right now. I am sure she will come back with lots of products. Dr. said Doxil would be a good drug if there are no clinical trials. Recommended against Avastin because 1-2 percent have significant GI trouble and with her hx she would be in the high risk group for this. We will see her again on Thursday to get results and see what she thinks. Turning this into a mini vacation. We have tomorrow off so are going sight-seeing and then off Thursday afternoon as well. Home Friday morning. So, having some fun as well. Love ya all, P

from BGGN ...

Primarily, I want to thank all of you who contributed to making my birthday last week such a special and memorable event: the hats, the cards, the facebook messages, the love, the caring ... I am truly one of the luckiest people I know.

As expected, the blood transfusion from last week helped tremendously. My lab values all came up to normal or close to normal so I was able to have chemo this past Wednesday. My CA125 dropped from 283 to 241, which was good news. I met with my oncologist on Tuesday and he feels that as this coming Wednesday will be the final dose of the six courses of this particular chemo, and my tumor marker numbers are still not dropping fast enough, I need to switch to a different type of chemo.

After much discussion and exploration, Paul and I have decided on a slightly different path.

I have been in contact with MD Anderson Cancer Center in Houston for several months now regarding gene sequencing, clinical trials, anything new in the ovarian cancer area. I scheduled an evaluation for May 15th, 16th and 17th. We just feel that we’re down to one or two chemo agents left to try here and, based on the conversation I had with the doctor down there on Friday, this is the time to do this.

This is a scary proposition, leaving the security of my doctor, my nurses, etc. It may or may not prove to be worthwhile, but hey, at least we’ll get a visit to lovely downtown Houston.

“Courage is the price that life exacts for granting peace.”
Amelia Earhart

I love you all,
Nyshie

Mom's cousins & their wives sending love!

Roni, Billy, Lyle & Cela

from Mom ...

Another fun day at the office ...

Actually, my “office” these days is Penrose Hospital where I spend a great deal of time on a weekly basis. Last week I had labs drawn on Tuesday, the double-whammy chemo on Wednesday, extra IV fluids on Thursday and Friday. I took this past Monday off (which I shouldn’t have), extra IV fluids on Tuesday and labs drawn, extra IV fluids Wednesday and got blood transfusions today(labs showed very low hemoglobin-7.6, normal is 11 to 14). I was up and down after the chemo but really crashed on Monday through today because of the anemia. I should be feeling much better after tomorrow.

Otherwise, life is pretty good. I had an incredibly, wonderful visit with Big Al, who came to visit last week. His kindness was overwhelming. Just as I am overwhelmed by the kindness and patience of Paul, our children and our friends on a daily basis. We had a beautiful, joy filled “pagan fertility egg hunt” on Sunday with all of the grandkids. Maggie and I took Vivian, Ila and Nyshie for a joy ride in the convertible with the music blaring/dancing/singing/laughing. On some occasions, when we let ourselves, Paul and I get a little sad over the loss of our “lives” as we knew them, how everything revolves around the big “C” now. I thought this quote was pertinent.

“Don’t cry because it’s over, smile because it happened.”
Dr. Seuss

And we do smile often and appreciate every day that we have together.

I love you all,
Big Giant Grandma Nyshie

from Mom ...

Good news, not so good news ...

The good news is my CA125 went from 301 to 283, which is not a significant drop but at least the chemo I’m on appears to be managing the disease process for now. If I were able to do the platinum chemo, it probably would have had more of a significant drop, but that’s water under the bridge. The bad news is that I’ll need to stay on the chemo until the numbers get below normal, which is 36. I most likely will not finish up with 2 more courses, as we had hoped, but instead may go on into the summer. At this point, it’s anybody’s guess.

What can I say? We’re disappointed but happy it didn’t go up. I’d like to share a short story I just read in “Letting Go” by Morrie Schwartz (Tuesdays with Morrie).

"A little wave is playing joyfully in the ocean until he realizes he is minutes away from crashing into shore. Another little wave asks him why he is so upset. He replies that they will both be destroyed when they crash onto the shore. The second wave replies, “you are not a wave, you are part of the ocean”!"

And I am merely a very small part of all of humanity. Kind of puts things into perspective, doesn’t it?


I love you all,
Nyshie

Maggie here ...

Hi everyone,

Just a quick update from me. Mom gave us a "minor" scare on Friday. After three days of misery she went to the hospital with a blood pressure of 76/34. I, and the nurse, thought she was presenting with heart failure but after a couple bags of fluids and I think some steriods she bounced back. Tough lady that she is! She felt much better over the weekend.

She had labs drawn today. So, we wait. If the CA125 comes back with a significant decrease then she will have the gemsar on Wednesday as planned. If it hasn't decreased enough, or has gone up, they will discuss a different chemo plan.

Thank you all so much for checking in and your continued love and support.
Maggie

from Mom .....

No really ... cancer suxs!

I’m on day 7 following my double chemo last week and still feeling like I’ve been poisoned. Hopefully, it will start to get better and I don’t have chemo this week. Yeah! I’ll have my CA125 results and another round of chemo next Wednesday, the 28th.. Keep your fingers crossed for low numbers. If my numbers haven’t come down, I’ll have to begin a different chemo and probably be starting over with 6 rounds of it. Although it’s healing, my abscess is still open and draining requiring a visiting nurse every day to change the packing. And yes, I would like some cheese with my “whine”.

Otherwise, Paul and the kids are all doing well overall, and doing their best to cope with this situation, sometimes more difficult than others.

The best and biggest news is that my favorite quarterback ever, Peyton Manning, is coming to the Broncos!!!! Yes!!! Hard to believe I went to college at Ole Miss with his father, Archie. 15 years goes by so fast. Really, my heart is full, life is good.

Love you all,
Big Giant Grandma Nyshie

more from Mom ...

And, so it goes ...

I saw my oncologist yesterday b/c the abscess area was not looking as it should and I had increasing pain in the area. He did have to re-open my incision about 4-5 inches (sans a local anesthetic) and if you remember the movie “The Exorcist”, that’s pretty much what came out of it. Needless to say, the abscess has not healed and I’ll start with the wound care nurse coming back to the house tomorrow to remove and replace the packing, and will continue on antibiotics for another week. He’ll check my labs (drawn yesterday) and I’ll see him again on Wednesday. If everything seems ok, I’ll do my scheduled chemo then. Otherwise, all is well. Beautiful, sunny Colorado day in the sixties. Life doesn’t get much better than that.

Love,
Big Giant Grandma Nysh

from Mom ...

Enough already ...

The major chemo sickness has decreased over the last few days, but I still haven’t gotten back to my spunky self. I saw my oncologist yesterday for a “pre-chemo” visit and for an enlarging something (mass??) under the top area of my abdominal incision. It turns out I have quite an infection (abscess) brewing under my incision. It opened enough on its own to drain quite a bit. We’re going to try a heavy antibiotic orally, if that doesn’t work, he’ll have to re-open my incision and perhaps IV antibiotics. Because of this, my chemo for today is postponed until next week as it would decrease my white count, which I need to fight this new infection (Catch 22??).

My CA125 went from 316 to 301, not great news but at least it didn’t go up, so we’ll be continuing with the same chemo agents for now. The good news is I’ll have a nice, non-chemo sick visit with my dear friend Kathleen, who came out to stay with me while Paul is out of town.

Love you all,
Nyshie

Love from the Mardi Gras parade in Bay St. Louis!

Mom's sister Liz sent these!!!

from Mom ......

Happy days are here again ...

I started my “easy” chemo last Wednesday and amazingly had very minor side effects, just fatigue in the evening. This week has been a little more interesting. On the way to the hospital this Wednesday a.m. for the “double chemo”, Paul had to pull off the road for me to demonstrate dry heaving for all of our neighbors taking their kids to school. Lovely. I had some fatigue and nausea that evening but nothing major. Then, back to the hospital on Thursday for extra IV fluids. Very severe nausea yesterday and today. Heading into the chemo hole for the weekend.

Good night Chet, good night David and thank goodness for Marinol.

Love you all,
Big Giant Grandma Nyshie

Robert ups the ante .......

Mom's nephew Robert, who lives in Honolulu, sent some amazing pics ...

Robert on the right with close friends Maya Soetoro center, President Obama's sister, & her husband Konrad Ng


Robert with Governor Neil Abercrombie & Hawaii's first lady, Nancie Caraway

Beautiful Quilt!!!

This amazing quilt was a gift for Mom. Her dear friend Goddess Gayle has a phenomenal daughter-in-law, Shauna, who made the quilt.
The title at the top says, "What Cancer Cannot Do!" Thank you Shauna!!!

from Mom ....

Paul and I saw my oncologist last Tuesday and surprisingly to us, my CA125 (tumor marker) has increased from 265 to 316! The doctor was not terribly concerned and felt that it was most likely a result of the tremendous amount of inflammation in my abdomen and pelvis from the surgery. We discussed my chemo at great lengths and decided to postpone starting it until this coming Wednesday, the 8th, as I’ve lost a significant amount of weight and am still very weak. I’ll be back on my previous schedule of day 1-Gemsar and day 8-Gemsar/Taxotere and then 2 weeks off.

Hypothetically, I will need 4 more rounds, but it depends on my numbers. If my CA125 doesn’t come down after the next week, he wants to change to a different chemo.

A “wait and see” game if you will.

I am feeling stronger every day and with that have a more positive attitude. Beautiful to see snow on the Peak. Thanks again to each and every one of you for the continued love and support.

Love you all,
BGGN

from the fabulous Graves & Breland families ...

on the couch; Mom's 1st cousin Melinda, holding grandbaby Maddie, & her husband Carl, holding granddaughter Baylor

on the floor; Jason, Mary Evelyn, Brinkley - Megan, Tanya & Chris

more from Mom ...

One step forward ...

Much improvement since my last update but not without challenges. My incision has almost completely healed and I definitely have more energy. I’m still having a great deal of difficulty eating and haven’t put on any of the weight I desperately need. Spent yesterday afternoon at an urgent care center for extreme fatigue, weakness, nausea and a severe reflux attack. The doc there was concerned that my intestines are becoming blocked again, but my oncologist this a.m. was not so concerned. We shall see.

Headed for the couch, the evening seems to be the “witching hour” or I’m just worn out by the day’s end.

Love you all,
Nyshie

from Mom .....

Whew!!!

I’m finally, slowly but surely, fighting my way out of the last month’s sabotage on my body. I still have quite the abdominal incision, which is being repacked 3 times per week by a home health nurse. Have lost lots of weight and all of my hair (as previously posted). Every day brings a little more energy and a little more light to this dark place I have been in. We saw my oncologist last week and I’m scheduled to re-start chemo in 2 ½ weeks. It should take about 2 ½ to 3 months to complete the chemo. We completely missed the holidays and still have a pile of gifts in our living room, which is driving some little girls I know crazy.

The good news has been lots of football to watch, the bad news is my teams are losing right and left ... Go Packers!!!

I just want to give a heart felt thanks for all of the love and support we have all been receiving on a daily basis in the form of visits, calls, cards, food, chocolate, etc. Way too much for me to respond to on an individual basis, but please know your kindness has been appreciated. A special thanks to Maggie for keeping the blog up to date, to Ben for coming from Massachusetts to take turns with Paul sleeping in the hospital, and to Paul for seeing me through this yet again and for my entire family for caring for me in a thousand different ways. Beth, Danny, Chad, Eric, Jess and Matt have continued to provide amazing moral support and love.

Love you all,
Nyshie

Doing well at home ...........

Hi all,

Sorry I haven't posted in a couple days, I sort of ran out of steam.

Mom is doing really well. She's up walking, showering, even went for a short ride in the car with Paul today. The wound care nurse comes Mon, Wed and Fri to change the wound dressing & packing. She also has a PT coming out today to do some exercises with her. Ben reported to me that she has been eating pretty well too.

I think she has an appt. with her doc on Thursday. I'm not sure if he'll want to start chemo next week or wait one more week. We'll see??

That's all for now ............

Love,
Maggie

Unbelievably good news ... anyone?!!!!

Mom is HOME!!! Yes, I said it, she just got home!

Her bowels started working last night, so to speak, and her red blood count was up this morning from the transfusion. The PT practiced some stairs with her, IV came out and she is home!

The dirt road up to the house was a bit brutal and she is feeling a little nervous but I think when she wakes up in her own bed and looks out at her snow covered trees, she'll get her fight back.

A wound care nurse will come out every other day to check her incision, change the packing and dressing and check the wound vac. I assume she'll have labs next wk.

I think that's it for now.

Lots of love and massive thanks everyone for all of the support!!!
Maggie, (Nysh, Paul, Ben, etc.)

Friday

Mom was really wiped out today. Her hematocrit was pretty low so they gave her 3 units of blood. Her foley is out, which is nice, so she is up walking to the bathroom. I think she only made two trips down the hall today, too much pain. Plus, the wound care unit came in and had to completely unpack and repack the gauze in her wound, very painful. Her bowels need to awaken, which is the next crucial step. Monday is the earliest discharge possibility ... for now.


Thanks everyone,
Maggie

Thursday evening ...

Overall, Mom had a much better day. Her spirits were better, she actually took some steps, and her appetite increased! She walked out of her room and next door to the shower, HUGE! She sat up in a chair several times. It is still extremely painful for her to move but she made some great strides today.

Things have been very emotional and overwhelming. One day at a time I suppose ...

Night,
M.

Wednesday evening ...

Sorry for the delay in updates.

The wound care unit has been coming up and changing the dressing and gauze packing. The doc also put in a small vacuum line that will continuously pump any infection or fluid from the wound. This is helpful with the healing time too.

She is supposed to sit up 4 times a day. A physical therapist came in today to show her some "exercises" to do. PT said she still has quite a bit of strength in her arms and legs ... good!

She is still in a lot of pain but her appetite is coming back!

Paul took last night, Ben is there tonight.

She is feeling very overwhelmed but definitely hanging in!

Night,
M.

"Minor" speed bump ........

Well ..........

Her doc came in and the redness around her incision had spread overnight, plus the fever has yet to go away, so he opened up the incision. There was a large pocket of infection, which they drained and packed with sterile gauze. She will have an open wound with dressing changes so that the infection can be resolved.

She continues to eat a litte more.

I'm running out the door but will update later.
M.

Mom is "present!"

She is coherent and alert! She continues to do well with liquids. The hospital brought her coffee, jello and swanson chicken broth ... lovely. But, yay Ben, he made her an organic, root veggie broth and some miso soup!

She is having a short nap and then we are walking the halls.

Still haven't seen doc this a.m.

More later ............

Improvement!

The Ng tube is OUT! She did have the "11th floor enema" and it worked. She has been up out of bed some and I believe having some liquids.

Hopefully sleep tonight.


Loving,
M.

Happy New Year!

Well, a bit of a rough night. More agitation, confusion, etc. They are going to clamp off her Ng tube and see if her belly fills or if things will go south. Also, I think she's in line for an "11th floor enema." Don't ask! Doc wants her to back off pain meds and get up a little today.


We'll see ...............

More later!

Love from Alaska!

friends Steve & Debbie, Nysh's niece Miki & her husband Ross
adorable great nieces Emi & Maya