CT Report From This Morning

Well, the picture of the clock is important because that is what time I was able to leave Siteman today! Yes, no more 3 day chemo for now, and I was out of there in time for lunch!  From here on, I will have chemo more frequently (3 Tuesdays out of 4) for briefer periods......just a few hours including labs and doctor visits.

The results of the CT scan are good news, bad news. The large tumor in the pancreas (about 3 in by 2 in) has not changed much. That is good! The 2 metastases in the liver have increased significantly (doubled) and have given birth to two more babies. That is not good.

So the doctor wants to try Gemzar, a typical pancreatic cancer drug, to control the tumor in the pancreas, and an experimental drug (for my cancer but already approved for metastatic breast cancer) called Abraxane to control the mets. It is off label for this purpose and has not yet been approved by my insurance company. Hopefully it will be good to go next week.

My labs are good. I have a blood clot around my port, so I am back on two shots a day of Lovenox. Platelets are a little low (understandably with that medicine) but other blood work and liver enzymes are normal!

We are thinking about having a memorial for Ralph next week. I have chemo on Tuesday, and we will try to get to Atlanta Tuesday or Wednesday for the service.

Thanks again for all the comments on email and in the blog, as well as the notes and phone calls. It is really uplifting and encouraging to me.

Hooray for getting out of the hospital at 12:40 !

Lynne

P.S. One more thing. Depending on how I tolerate the new treatment, we will retest in two months.....about the middle of February.

Ralph Joseph Cooper, II. Resting in Peace

My Brother, Ralph

My brother, Ralph, shown here with his daughter, Angel, died today at out Lady of Perpetual Help Hospice in Atlanta. He slept away peacefully after two years with lung cancer. Iris and Paula were on their way home from a visit here, but our brother, Clark, and niece, Beth, were with him. Thanks for all your support!

Lynne

"Dreams Come True with Rosie!"

Rosie and Susie brought dinner and the entertainment!

Tai Chi and Qi Gong

Shawn Tucker is teaching me Qi Gong Tai Chi at Brentwood Center for Health for its benefits on health and wellness. He is also doing energy work and designing an at home program. It's a great antidote for all the toxins of chemo!

http://www.webmd.com/fitness-exercise/tc/tai-chi-and-qi-gong-topic-overview


Lynne

Thanksgiving on Whidbey Island

Thanks for all the warm messages through Thanksgiving. I went to Rosie and Sue's home on Whidbey Island for a long winter's nap with Jo, Cec, Therese, Crowley and Mary Beth, my 14 year old niece. We had a wonderful relaxing time watching the ships come in and out of Puget Sound from the front windows, reading, watching movies, playing on line, talking and laughing...lots of laughing! I did great except for a mouth sore that finally went away (Faye called in a mixture of viscous lidocaine and maalox).
 
Today I started my 4th chemo and was at the hospital from 8-6. Jo will unplug me from this one on Thursday, and I'll get another week off! This time, though, I have an appointment for another CT scan which will tell the story of how the chemo is doing! I will keep you posted.

Please do something special for World AIDS Day on Thursday!

Thanks for all the love and good energy!

Lynne

The girls of Whidbey

Fashion forward on Whidbey Island

A Quilt for Me!

Rose made her first quilt for me. The name of the quilt is, "it takes a village" and Rose said it did take a village to make it, including Anne Bader and others!

Books

I am reading Seriously, I'm Kidding by Ellen DeGeneres for a break, but lately have really liked Still Alice, The Immortal Life of Henrietta Lacks, the Hundred Brothers (a little weird), a Visit from the Goon Squad (also a little weird), Sarah's Key, The Book Thief and The Weird Sisters.

Lynne

Third Round of Chemo

Tuesday I started my third round of  chemo.                                  Bridget made Tuesday go a lot easier!
Here's JoAnn checking out some of the meds!

My National AIDS Housing Coalition Colleagues

This weekend we had an east coast attack when my National AIDS Housing Coalition board of directors colleagues, Gina Quattrochi and Shawn Lang came from New York and Connecticut to see if I was faking or really sick! Mark Anderson, recently a local, joined us for a mini NAHC board meeting which, while recognizable, did not quite measure up to the usual brilliant but chaotic gatherings we have had around the country and internationally for the last 20 years! Thanks, Dudes!

And thanks to the Gee Rosenthal Bed And Breakfast, Linda Weisenstein (who brought enough food for a small country), and to Jo and Moe, who handled all the home chores!

I am so grateful for my friends who traveled to "fly over land" to see me and to all of you (Rosie and Susie, too) who helped me show them a good time.

Lynne

Going to the Gym

Well, the chemo that so many of you have sent encouragement about was cancelled because my white cells were too low, so I am rescheduled for next Tuesday. In the meantime, Jo and I are going to the gym, and I have meetings at Doorways. So it is a good day but a slow day. I need to rest, stay away from lots of people and try not to overdo it!

Lynne

Welcome to Minnesota!

I reflected that the blog about my journey with metastatic pancreatic cancer might look a little like a travelogue or a holiday letter about vacations, great friends and exceptional opportunities. It has been! I am forging my own answer to the question, "What would YOU do if you knew you only had a limited time to live?"

I am not trying to be morbid, and I hope to get a couple more laps around the track, and, as I mentioned before, I DID just sign a two year lease on a car (more on that later), but aside from the obvious pain in the ass of being sick and dying, this is the best. I have some Doorways responsibilities, and I have a pile of medical and insurance stuff to procrastinate about, but otherwise I am doing pretty much what I want to.

No more do I anguish about the expectations of others, or make myself do things I don't care to do, or should on myself like I might have in the past. JoAnn says I have lost my filter (did I have a filter?). I am freer with money. I don't mind insomnia, because I can do things I want to do and sleep.......whenever.

My niece, Mary Beth says skydiving should be on my bucket list, but the fact is that SHE is on my bucket list!

So my most recent vacation was with the Caven family in Minnesota this weekend. This is Mugs and her mom, siblings, outlaws and a multitude of grandchildren, nieces and nephews. I have spent a good bit of time with them over the past 25 years, but my insight this time was about how healthy and gracious Eleanor is, how generous and hospitable my generation is, and how engaged the young adult grand children are. I mean they sit around and play games and laugh and talk literally all the time they are together. And they all like each other more and more over the years I have known them.

So thanks Cavens and Burgers. I had a great time!

Lynne

A Missed Opportunity

Last night we had the RED SPONSOR'S party at Mark Spurrier and Karl Koesterer's. Wow, it was one of the best we have ever had. RED is really on a roll.


I got to speak and my usual task is to tell the story of the clients, the meaning of the mission, so we all can be reminded of why we are there: to house and care for poor people living with AIDS so they may have better health, improved quality of life and comfort and peace during their illness.


Well, I talked about my own health issues and how much they are like our clients'. About how humbling it is to be experiencing many of the symptoms they have and to be dependent on, and grateful for, the kindness of other people.


What I didn't think to say is how dreadful my life would be if I did not have housing or someone to take care of me. How nasty it would be to have diarrhea or nausea on the streets or in a shelter. How impossible it would be if I had children to take care of while I was sick...or my constant need to sleep, to get to the doctor, to take medicine at the right time, to bathe or to trim my daily disappearing hair. I missed the opportunity to be a witness, although a protected one, to the devastation of illness without housing.


Fortunately, Chuck Miller stepped up and covered the essence of our mission in his remarks. But I could have shown how real it is.

Next time I will. And I thank Chuck and Mark and Karl and all the chairs and sponsors who came!

And I still haven't heard anything back about Chuck's homemade chicken pot pies. Maybe I will soon!

Locked and Loaded

Lynne and Paula arrive for Sunday dinner at Ann and Terry's. Note the trusty six shooter!

Last Chemo....stream of consciousness about travel, chicken soup, hair, friends and longevity.

I have only had chemotherapy twice, but already my life is organized around it in so many ways! This last 50 hour infusion was easier because I knew what to expect. I haven't been sick except for stomach stuff, freezing mouth and hands and maybe a cold coming on. But the fatigue is just killer. Even reading, which was my refuge, is too much energy to muster. Yet, I don't sleep. I have my own midnight in the garden of good and evil!

Visits from people have been great. When friends come for an hour and bring food, or help eat what someone else has brought here, it is the most fun. In fact, I am having quite a challenge in the Jew versus nun chicken soup contest. The Jews were way out ahead, but the sisters are making up ground steadily. I will need more entries to make a final decision, and several will have to be re-tested. I expect Sister Betty will take the baked goods single handedly once she finds some ripe bananas. I was kind of hoping for one of Chuck Miller's chicken pot pies.

The hair is coming out. I called Mary Sue and Alison last night to be sure I can get it shaved with their boys' clippers at short notice. Best part was Mary Sue has a new phone she does not know how to turn off, so I got to listen to her analyze what she should have said to me after she thought I was gone. LOL!

I am "off" this week. I do not have chemo, and I hope 

to get to Minnesota for the weekend to see Mugs and the northern sisters. I fact, I had hoped my hair would hold on until I got back. Last time I was at Doorways, I modeled a beret, a ball cap and a hard hat to determine how I should cover my head. I can't quite do the wig thing right now, since I hate anything on my head even in winter. Scarfs are a little too Cleopatra for my personality. I suspect I will wear some sort of a hat in polite company and "go rock" the rest of the time, as the Sistahs at Doorways have suggested. I'll just have to see what that pasty white head looks like. I don't know how low it will go, but I do remember Rosemary Bishop once saying, about losing pubic hair, "how would you make soap suds to wash?" Inquiring minds want to know........and with luck, you'll read it right here!

JoAnn has been my personal physician, sister servant, housekeeper, negotiator, shot giver, medicine keeper, caution minder, drama queen and CARE giver. I have asked so many times, how do people do this on their own?  Many kind people have taken on small and large tasks (if you have not been asked yet, don't feel bad. You ARE on the list!) and I am generally feeling well cared for and much loved, though I don't seem to have time or energy to thank everyone. It is humbling.

I miss being at work and with people there a lot! I am in touch with Joe Noelker, acting ED, and several board members and staff, but it is hard not to be part of the day to day. I hope to go to the board meeting and the RED Patron event at Casa Spurrier y Koesterer this week!

Lots of people, knowing the typically poor prognosis for this cancer, have asked, or hesitated to ask, what the outlook is. It seems like there are 1, 3 , and 5 year plans with rapidly decreasing probability. It sounds like I will stay on this toxic chemo, or some variation of it, for as long as I can stand it, every two weeks,  or until some other scientific opportunity emerges. In real terms, I am thinking about a two year lease on a car, and I hope I can get another afterwards!

I can't keep up with replying to comments on the blog, but I love them!  Please know how much they, and the cards, and the prayers, and the food and the errands, have all meant to me! I hope you can feel as personally thanked as I feel personally uplifted by all your good energy.

Love,

Lynne

CSJs in Gulu

I was just reading the CSJs Blog form Gulu, Uganda, (csjgulu.blogspot.com) and came across the following, very touching post:

Martyrs Day Celebration on Saturday October 23, 2001. In this sacred space they prayed heart-felt prayers of thanksgiving and petition included a prayer for Lynne Cooper, friend of the CSJ's and friend of Uganda, who recently learned she has pancreatic cancer.

October 27, 2011

Murphy

Last night, about 20 of us gathered at Murphy’s to celebrate her 17 years of life since the day she was shot in 1993. We spent that night together and we hope to spend it together for years to come!

Food!!

3 Jewish chicken soups

1 Beef soup

2 chicken dinners

2 pork loin dinners

Wow! We have eaten so well for the last two weeks!! Thank you.

Chemo

I finished a 50-hour chemo today and went to the gym for the first time. Yea! Jo took ½ hour with my trainer and I took some weights and “HITS”. It all felt good.

My immune system is low, so I won’t be out so much and certainly won’t be eating out until the ecoli outbreak is finished here.

Altanta

Lynne, Iris and Paula

This weekend I had the opportunity to go to Atlanta to see my family. Everyone seemed in good spirits. We had a party on Sunday. Jim's sister and her husband, Veva and Billy, were able to join us along with the Irises, the Paulas and Ralph. Almost 30 people! Jo and I had lunch with Clark on Saturday, and that was great!

Missing my brother Clark with love

Today I get another chemotherapy treatment which starts this morning and will go until Thursday afternoon when JoAnn takes out the needle. Then I will be free for another 12 days. I am hoping to take a week off from chemo during Thanksgiving so that I can go see my friends in Whidbey island Washington State .

I really want to say thanks to everyone for all the notes, calls and cards. All the good wishes have helped me feel energized and healthy , and I really appreciate it. Since this is my second chemotherapy, I will have a much better idea about how I am going to feel going forward: when I will be able to work and when I'll be able to travel are very important to me because I want to get back into the swing of things as soon as possible.

I have thought a lot about what I would do if I have time. This kind of experience has a way of really helping me focus what I am really interested in.

I think I would try to teach at the Jesuit High School in Gulu, Uganda. I would write a book or two sharing what I have learned at Doorways and in life in general. And I have a couple of people in my life who would still be my special projects. There's one other thing which I cannot remember right now! Of course, we will finish the maternity ward in Gulu.

Lynne

How to comment on my blog

Evidently—according to feedback I’ve received—it’s not so easy to comment on my blog and leave me notes and messages. So, I had my blog guru write up the following, easy-to-follow (I promise) directions.

For those of you who already comment on other people’s blogs, you know what to do; for the rest of us…

To Post A Comment (without having a profile)

1. Click on the “Comment” box

2. Write a comment and then click “Post Comment”

3. In the drop-down box, choose “Name/URL”

4. Type your name in the “name” box, leave the “URL” box empty, click “continue”

5. Click “Post Comment” again

6. Enter the word verification

7. Click “Post Comment” one last time; it will tell you ‘comment published’

8. Voilà! You have just successfully sent me a comment!

It really is much easier than it sounds and once you have done it one time, it will get even easier. If not, refer back to this post!

Sister Jo and Lynne ~ Off to Altanta!

John Russell: Marathon Runner!

I am so touched. John is running a half-marathon
this Sunday for cancer. He has dedicated his run
in honor of me. Who knew he was so buff. Go John!

At the Series!

Faye and Lynne at game 2 of the World Series!

Sister Doctor writes my daily log

I am going to Atlanta to see my family!

We are flying to Atlanta at 10 am Sat and returning at 8 pm Sunday eve. I have told my sisters what I can do and that Guido (JoAnn) will be in tow with my diaper bag. We have a private room and bath and plans to see Clark on Saturday, and see everyone else at a party at Iris' on Sunday. Phil Zinzer gave me detailed instructions about germy little kids. Basically wash your hands all the time.

Jo had insisted that I order a wheelchair and was really put out when I didn't. I tried to explain to her that the only available seats were in the exit row, and they had already asked if we were both willing and capable of operating the exit door. I had answered yes. So how could I order a wheelchair? Mary Sue and Ali will do the airport runs.

Other news

Murphy went out and bought me a cushioned toilet seat, and Johnny from Doorways came over and put it on. Oh my tired aching butt.

I called my Uncle Terry and my cousin Rene’ to share info with the Jacksonville/Valdosta crowd. Theoretically I have covered everyone now. I know it is hard news to hear, and we are all still adjusting.

I am being treated for a blood clot behind my left knee. My calf is still an inch bigger on the left, but guess what! So is my left lower leg and my left bicep. It's a wonder I can walk a straight line!

Jo and I made a quick trip to Bloomington to see Judy who had her foot reconstructed, so I slept in the back seat for the 2 hour drive. It all went well, and we got to see Judy, Rich, Jennifer and Jon!

As Evelyn Cohen would say, “That’s all for today, Folks!”

"I feel pretty, Oh so pretty!"

"I feel dizzy
I feel sunny
I feel fizzy and funny and fine
And so pretty, Miss America can just resign."
[borrowed from West Side Story by ms]

Lynne goes to the World Series!

I am Super excited! This Thursday night—thanks to my good friends Faye and Paula—I am going to the World Series baseball game. Yea! It will be cold and, given my condition, cold is not good! Sister Jo is a bit worried about if I would get sick and need to be evacuated. So, need to come up with an extraction plan….Hmmmm!

Sister Jo’s also worried about how she'll get to me or get me out of that mess if I just need to get away. So, I asked my dear friends on Pennsylvania (MS and Alison), “Penns” Team, if they would consider being part of the extraction crew by car or by scooter. And, of course, MS sent me this picture just to make sure I had no worries…all is taken care of!

I sincerely hope I will not need them but, god willing, if I need to, I am prepared…

Go Cards!

How I found out!

So, several people have said PSHAW! How did you find out about this?

I really had no idea until September 30. I had been having pain in my right side and shoulder...always together.... And that seemed weird. Of course, my doctor, Dr. Webb, MD, said those were classic gall bladder symptoms. Not having any gall bladder medicine, I called my back up internist who ordered an ultrasound of my gallbladder on the 30th. One thing led to another, they spotted the goobers and immediately and called me right back for a CT of my pancreas. Looking over people's shoulders and generally making a nuisance of myself when they were dodging my questions, I knew what it was that day. Someone called me that night (my doctor, who was out of town, said, You can't avoid this patient. She is too knowledgeable and assertive (he may have used less nice words to that effect); someone needs to call her NOW.) I was glad he did that.

So they told me I had metastatic pancreatic cancer, and you can look the rest up at Dr. Web's website. Mayo Clinic is good on this, too. I was over at my friends, Terry and Jerry, who walked me home, and we were all pretty much in shock!

By morning I was mobilizing. I waited until 6 am to call Phil Zinzer. I figure any self respecting doctor would be up thinking about things by 6 am even on a Saturday. He explained that I did not have a diagnosis until they had a biopsy. Jimmy Jenkins came out of retirement to move things through Siteman very quickly. I had an endoscopic something or other biopsy on the 5th and with that a diagnosis beyond a doubt.

The next few days I spent talking with my sisters and friends, seeing other doctors, and finally, planning for a 50 hour chemo starting on the 11th. Oh, and I realized I had a blood clot (for which i am now getting two shots a day in my stomach) and, most important, JoAnn (Sister-Doctor) got home from Africa.

There have not been other symptoms that I know of except that I have had periods of unexplained fatigue, usually in the afternoon or evening. The one symptom I have asked about each time and checked for 4 times a day, weight loss, has not shown up!

October 17, 2011

Last week I announced to Doorways staff and the community that I have pancreatic cancer and am undergoing treatment. The Board of Directors has been planning support structures for operations during times when my presence and work schedule may be limited. I am pleased to announce the first of such structures.

The Executive Committee of the Board of Directors has appointed Joe Noelker as “Acting Executive Director," a staff title reporting to me. Joe currently serves as Doorways’ general counsel and is a member of the Board of Directors. He has graciously agreed to be present at Doorways on a regular basis to help coordinate operations and to provide consistency to staff.

In the past several months, Joe has assisted Doorways staff and me with contract, employment and other issues. Through this involvement, he has become familiar with Doorways’ programs and work routines.

I share the Executive Committee’s enthusiasm about Joe’s judgment and experience. Doorways is very fortunate to have someone of his caliber available to assist us on such short notice.

October 14, 2011

Hello all!

I have finished my first 50 hour chemo and so far have been weak (yuck) but not sick (yea!). I get two tiny shots in my belly every day from Jo. I am eating. My biggest complaint about this is that every list has weight loss as a symptom. I have asked every doctor where is my weight loss symptom! I check 4 times a day on the scale! NO weight loss symptoms.

I will keep you posted!