No News Is Good News!

Sorry this blog has been silent!  I have been busy, and fortunately, have not had any challenges worth mentioning.  That's why I say no news is good news!


Health-wise I am doing pretty well.  There is still some neuropathy in my feet and sometimes hands  It is not painful, but I have lost my balance and landed on my ass trying to make a great big tee shot!  Yes, there is still golf...this week at Bellerive and Westwood!


A second drawback is the fatigue.  I do best on days that I get to take a 2-3 hour nap, and I am winded with relatively mild activity.  I still life weights three days a week and have been going other days to do cardio to increase my stamina.  The chemo schedule is still three Tuesdays on and one off.  The end of this month I will have a CT to see the status of the cancer.


So, overall, i feel like things are going really well.  I am not in pain, and I am not throwing up; that is good!

It was a hair-razing moment!

Shawn, I did finally cut my straggly hair over at Alison and Mary Sue's.  Pictures are included!  But, I am just at 1/2 inch...not shaved.  So, you are safe for now!


Jo is still keeping track of my medicine, because my memory is shot.  Sometimes I can come up with what I am trying to say within a few minutes.  Work stuff is easier to remember than personal stuff and names.  But at least I am usually taking the rights pill and the right shot at the right time.


I have been able to be at work and do work at home more than I expected I would, and that contributes to the fatigue.  We are taking over the Medicaid nursing in our program, and although my role is supportive, I have some of the history and relationships that contribute to a very complicated process for our staff.  My job partner, Joe, our Administrator, Kim, our new CFO, Steve, and our social workers, Joan and Chien, are all doing a great job!


The big news is that I am going to Africa! You know we have been working on a birthing center in Gulu (see www.maternityclinicgulu.com), and finally the land issue has been solved.  You can see a google earth photo of the site on the website.  JoAnn is going over next week for two months to push the selection of a builder, and I am going in July with two friends, Don and Buff, for 10 days.  We will all come home together in plenty of time for JoAnn's jubilee in August.  And that will be a great event. My friend, Rose, and I are dusting off our sewing skills to make her an Africa themed outfit for the ceremony.  Fingers are crossed!


During early April Cec came for my birthday and a couple of awards I was receiving.  One was the Doorways Edlin Award, and the other was the Civil Rights Enforcement Agency Award for Distinguished Service in Fair Housing.  It was great to have her here, and I think it was reassuring for both of us for her to see me upright and doing well!  She likes her new digs at Carondelet Center.  Her room looks out to the Getty and to the Pacific beyond.


Arch and Deb also came from Michigan to check up on me and we all stayed out at Rosie and Sue's for a couple of days.  Fun slumber party!


My great friend, Evelyn Cohen, and her son Andy of Bravo TV, were featured in the Parade Magazine Mothers' Day issue, and his new book, Most Talkative, is taking St. Louis and the media world by storm. It has been fun.  Buy the book!


Speaking of books, the best thing I have read recently is Jewball, about a professional Jewish basketball team in New York in the 30's. It is great!  I have also read Fifty Shades of Grey (interesting and disturbing), Defending Jacob, three by Kristen Hannah, Gilead-a Novel, Wading Home-A Novel of New Orleans, An Eve Duncan Collection by Iris Johansen, the Hunger Games Trilogy, Remarkable Creatures: A Novel, The Habit by Susan Morse, Crossed Dressed to Kill, The Orphan Master's Son, Little Bee, Down Town by Ferrol Sams (a friend of Jo's), the Guernsey Literary and Potato Peel Pie Society, Fat is the New Thirty: The Sweet Potato Queen...


And, we saw a great movie: The Best Exotic Marigold Hotel.


So there, that's all I can think of for now.  Thank you for all the love and prayers!


Lynne

Come, on down to AliSue's Kitchen Salon!

Good Friday!

Taking Betty and Cec to lunch

New Great Niece and Other Good News!

My niece, Sandi, and her husband, Kevin, have adopted Molly Rose McGill, who is the luckiest kid in the universe! You can tell from the photo that she knows it, too!

Also, I got my CT results today. My tumor and the metastases have shrunk since January 31, and I have no new metastasis! That means the Abraxane I am getting in chemo is working. I have some neuropathy in my feet and hands, and I have some two to three day long periods of complete exhaustion, but I am not sick, and I am not in pain. This is good!

Additionally, although I still have the blood clot, from the jugular through the superior vena cava and into the atrium of the heart, and the stent, it is all pretty stable, and I am able to go to the gym again! So I no longer have an excuse for being the only cancer patient on chemo who is gaining weight!

We also talked about other treatments,  the vaccine study and some protocols in LA and Texas, but for now we are staying with what is working (and not yet killing me!).

Thanks for all the love and support. Your good thoughts and prayers seem to be helping!

Love,
Lynne

Monday surgery.......and the rest of the story.

Nurse Dawn

Last I reported, I was scheduled for a surgery on my catheter and a blood clot that was growing in the atrium of my heart.

That was yesterday, Monday, and all went well. I wasn't completely out, but they kept me to the point of not caring too much. They could not remove the clot because it was chronic (meaning old and hard) and stuck to the wall of the vena cava, so they put in a metal stent to keep the vein open. I think I will have to be hand searched now when going through security.  There was not any pain, but there was a bit of tugging and pulling. I have some bandages on my neck, bruises on my elbows where the guy was kneeling when he pulled out the old catheter, and it is a little sore. We got home about 2:30, and I went straight to bed.

The excitement started when I got up to go to the bathroom. I have never seen as much blood as was in my toilet.... even on TV! I designed a science experiment to determine where it was coming from (my bladder), and, after calling the doctor, Jo and I headed back to the emergency room. By this time I am nauseated and throwing up. My doctor called ahead, and we got into a room at the emergency department pretty quickly. I don't know if you have ever been to the emergency department at Barnes, but it is a tough place. Donn and Buff met us there, and God bless them.  Donn stayed the whole time!

They started running tests, and I kept throwing up and passing what seemed like buckets of blood. By about 10 they figured out that I had what my nurse, Dawn, called, "the mother of all bladder infections."  That was part of the blood, but I also had hemolysis, a reaction to the anti clotting agent TPA that they had used trying to bust up the clot earlier that day. And I was dehydrated besides and still nauseated. So they started IV antibiotics and fluids, I was pronounced better, and we were home by midnight.

So, all is well. I slept all day, and I think Jo was as tired as I was. We finished some lentil soup, a corporeal work of mercy from before, and tonight I feel almost human again. WOW!
I am sending a photo of Dawn after she successfully healed me!

XO, everybody. I hope there is nothing to write for a little while! 

Our first spring salad!

Who is the real Hamburger Mary?

March Update

Hello, blog Friends!

I know I have some catching up to do since I wrote one month ago.

They did start the new chemo, Abraxane. I am still so fortunate to be without pain or a sick stomach. This medicine makes me feel like I have a cold or the flu with soreness and head congestion. I did stay in bed a lot last week whenever I was not at work or meetings.

The biggest issue, other than the fatigue, is a blood clot in the vena cava and  atrium of my heart where the catheter enters. So, I have venous congestion characterized by occasional bright redness and swelling in my face (maybe just a big head). This Monday they will go in and try to remove the catheter and all or most of the clot. There are lots of options once they get in there and decisions will have to be made as they encounter them. Bottom line, the doctor (an interventional radiologist) thinks this is something I should just take care of to continue treating the cancer.

I was a little bummed, so Jo and I went to look at puppies. I am not planning on getting one, but they are good medicine. I reflected that if I ever did get one I would name her either Fanny Lou Hamer or Zora Neal Hurston! Carly is just still a very hard act to follow!

Rose Jonas and I went out to the Cancer Support Community to check out their services. I was impressed at how upscale it is and the variety of things they offer. And being the non-joiner that I am, I found it surprisingly comfortable. All their services are free, and I could see myself taking advantage of them farther down the road. There are also great offerings for care givers and family members, and they have something in Atlanta, too.

Just the last few weeks I am honored to be named for awards: The Trailblazer Award from Faith Communities United, the Distinguished Fair Housing Service Award from CREA and, dear to my heart, Doorways' own Michael Edlin Award. Rosie and Susie have been planning on bringing Cec here from LA to visit, and they have gotten her a ticket to be here for the Doorways Annual Dinner and my birthday! It should be fun! I hope I am not too boring from the vantage point of my bed!

Over the last several months we have been trying to get my private disability kick started. With all the help I have from Jo, Donn, attorneys and others, I cannot imagine how people without advocates do it! One of my doctors thinks the fax machine at the insurance company is connected directly to the shredder.

That's it for now. I will try to keep you posted sooner!
XOXO

First, the fun!

We had a wonderful event for RED this year. My sisters, Paula and Iris, and my nieces, Beth and Sandi, were here from Atlanta, and many of my friends joined the Doorways family to net about $250k for housing services for people living with AIDS. This money allows us to leverage $5-6 million of other funding to assist 700 households, including their 300 children, with housing in which they can best manage their illness. The photo of roses which accompanies this paragraph are a gift to me from the Doorways board and staff for my 25 years of service to the organization.

I am also including a photo of my new medicine. This paragraph describes my medical situation for some of the folks who are asking for a little more detail. I have had some problems with a growing blood clot, and, well, you can read it here!

Fondaparinux Sodium Solution is what they replaced the Lovinex with when they found the blood clot had grown into the Atrium of the heart. It is just one shot a day subq.

Today I started chemo with Abraxane. I am off the gemcitavin (sp?) because it wipes out my platelets and causes a bunch of other nuisance stuff. They will retest the clot in one month. Probably retest the tumor and mets in 2 months. By the way, the tumor is about the same. The mets have increased a little and two of them have merged. My liver enzymes are still good as are the other labs. The splenic vein is occluded, but lots of others that could be affected are open.

They want to try to qualify me for the vaccine trial, but having a new blood clot within the last 2 months excludes me. It is possible that if I don't get another clot I can go on it later.

I am restricted from working out, but I can walk up to a heart rate of 120. I am still doing TaiChi.

I was going to go to a Chinese herbalist, but the oncologist wants me to hold off. She is Chinese and open to the therapy, but says they use combinations of 40 or more herbs and it is hard to determine which one is the problem if there is a conflict with the other drugs I am taking.

Thanks for your support! XOXO
 
Lynne

P.S. By the way, if you are following the birthing center project, Murph and Mary Sue have put up a new website at maternityclinicgulu.com
Check it out!