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!

October 10, 2011

Dear Friends,

I’m writing to share some important news with you.

Today I met with DOORWAYS staff to let them know that I will begin treatment tomorrow for pancreatic cancer. The days since I was diagnosed last week have been dedicated to confirming my status and contacting my family. Words cannot express my deep gratitude for all of the love and support I’ve received.

During this big challenge, I will continue as President of DOORWAYS and will be on the job as treatment permits. I look forward to working with all of you, as we have in the past, to give excellent service to our clients and unwavering support to our staff.

Now more than ever, I will be relying on the professionalism and commitment of DOORWAYS team. These are world-class professionals who know their programs inside out, and I have the utmost confidence in them.

Our board members came to today’s meeting to reinforce their solidarity with all of our associates. We have a diverse, skilled, dedicated and hard-working board that shares my confidence in our staff. They have re-affirmed their commitment to ensuring that we will continue to have the resources we need to maintain and grow our programs, and they are planning additional support structures for operations during times when my presence could be limited.

I look forward to seeing all of you at upcoming DOORWAYS events, including those in anticipation of RED in February.

If you are wondering right now what you can or should do, I ask for your support for me, my family and friends, and especially for our DOORWAYS clients and the staff, board members, donors and colleagues who work so hard to make their lives better. It is with humility that I join their ranks in relying on your generosity and support.

Thank you for joining us in this new part of our journey together.

With love,
Lynne M. Cooper, D.Min.