Wednesday, May 10, 2017

The saga continues

Last week I was welcomed in Warner Robins by the NARFE state convention. (National Active and Retired Federal Employees) -- I was one of their keynote speakers and they were great.  Thanks to all of you for having me there -- I enjoyed my time and getting to know some of your members.  This organization gives very very generously to the Alzheimer's Association not only on a state level but on a national one as well.  We are very grateful for all they do.

As I mentioned in my previous posts, I'm dealing with this breast cancer thing. Since then, a few things have changed.  My chemotherapy treatments that were suppose to start this week didn't. Last week I had a CT scan of my torso and a tumor was found in my liver.  In addition, a bone scan indicated there was a "suspicious" spot on my spine. Needless to say, these are not things we were prepared to hear.  Every time I go to the doctor I find more things I didn't want to hear and certainly weren't expecting to hear.

So, tomorrow I sill have another CT scan of my abdomen and my pelvic are so they can get a better look at the liver tumor.  A few days after that (we hope) there will be a biopsy done on that tumor to see if it is malignant. I will also have an MRI on my spine to look closer at the spot there to determine what it is. We are in that "hurry up and wait" mode which is always pretty agonizing.  Our next doctor's appointment is next Thursday and we are hoping that by then the results of all of these tests are in and we can again get a course of treatment.  I hate to take more tests because they keep finding new things.

All of this has been weighing heavily on my mind and my focus isn't clear. My friends and family have been there when I need them and I know they will continue to be. Please keep us in your prayers as we continue on this journey.

Saturday, April 29, 2017

More Doctors

Since I lasted posted I have visited an oncologist regarding the breast cancer diagnosis.  Not a fun few hours for sure, but we have a plan now and if all stays true to that I will start chemotherapy on May 10th.

One thing we are concerned about is "chemo brain" -- a side effect from the chemotherapy.  Short term memory can be hampered as well as other things such as lack of concentration and that 'foggy" feeling.  I know those things all too well now, I am hoping they don't get much worse.  But there isn't anything we can do about it so we are hoping for the best.

After 4 cycles of chemo (one week on, two weeks off - for a total of 12 weeks) then it is on to surgery.  After I recover from surgery we will be looking at radiation for 5-7 weeks (five days a week). 

It is going to be a long summer.

This week I still have a few tests to take to prepare for the start of chemo.

I also have an Alzheimer's speech I am giving in Warner Robins Georgia which is a couple of hours away.  It has been on the schedule for a long time and it is important that I do it.

Then, I have family coming in for my great niece's graduation from Emory University. So, all the things going on this week will help with me trying to keep my  mind off things -- if you can really do that.

Last night my husband and I attended a Billy Joel Concert in Atlanta.  I have never seen him in concert and it was a great show.  He sang for three hours straight and all great songs.  The show was held at the Suntrust Bank Baseball Field -- the new home of the Atlanta Braves.  We decided to stay the night in a hotel which was walking distance to the stadium so we didn't have to hassle with the parking and the commute at night.  That was perfect.  When we arrived at the hotel my daughter-in-law had brought by a little "goody bag" for us and in it my son left this note:
So cute and clever.  Made me feel good after a long morning with the oncologist.

Saturday, April 15, 2017

Indulge Me

First of All --

Isn't he cute?  Ian's first baseball game in Atlanta. I know I'm prejudiced -- but he is a bundle of joy.

It's spring and the weather is beautiful in the south.  Lots of things are going on with festivals, graduations and outdoor sports. 

This post is going to be long and probably ramble a bit, but as I titled this, indulge me.  I have a few speaking engagements coming up for the Alzheimer's Association and I have been trying to make some changes in some of my presentations.  One of the things I talk a lot about is the difference in funding research for Alzheimer's disease and other diseases like heart disease, cancer, and diabetes.  Alzheimer's is the only disease in the top ten diseases that cause death, that has no cure.  Yet, funding is proportionally lower for Alzheimer's disease that the rest.  I literally preach that we need to make Alzheimer's a CAUSE and perhaps people would look at it differently.  I know I am probably preaching to the choir here as most of you are my dear friends and give generously of your time and give financially to my "cause".

So, this week happened.  I was diagnosed with breast cancer.  Perhaps it hasn't sunk in yet, but my reaction to it hasn't been as devastating as I thought it would be.  We are in the initial phases or meeting with surgeons and doctors, etc. But, with breast cancer I know there is a chance for survival.  Unlike with Alzheimer's.  And, it is because of all the research, all the dollars that have been given and people speaking out about breast cancer that has made this happen.  I know many people that have had breast cancer and survived -- the treatment might not be great but the end result is. Those that have gone before me are my inspiration.

Several years ago when I was speaking to a class at UGA I mentioned that at one point a doctor at Emory told me that he would hope that I would die from something other than Alzheimer's.  I have thought about that a lot.  When I said this to the students one student asked if I was faced with another devastating illness would I seek treatment.  I told her I didn't know the answer to that and would have to wait until that situation ever presented itself (if it did). Well, now here I am and yes, we will seek treatment because our chances are good and I can see a positive outcome. 

I'm hoping that in time our Alzheimer's cause will have the same outcome.  Please continue to speak up, give and encourage people to look at Alzheimer's as the DISEASE that it is and help us fight this dreaded disease.

Friday, February 10, 2017

February 2017

I had the pleasure of speaking to an OLLI group in Washington Georgia this week.  They were a very attentive group and I enjoyed sharing my story and information about Alzheimer's with them.  Thanks for the invite.

My week has been an emotional one and one that hasn't gone too well. I cannot even begin to explain what has been going on right now so I won't. but, tomorrow I get to see Ian and I know that will brighten my week.

Monday, December 26, 2016

Surviving Christmas

It's the day after Christmas and I survived another one!  It wasn't so bad considering we had Ian to make us smile!

He was one month old on Christmas and a delight -- although his mom and dad probably don't think that when he is crying. 

One nice thing about my son being on paternity leave is that he is a little more accessible to us and was able to go with me and my husband to my neurologist appointment on Friday.  I was really hesitant about getting a new doctor, but being stressed out with my other doctor took more of a toll on me.  But we loved the new doctor -- he spent a lot of time with us and we talked about a lot of things, some options available to me and it was such a relief. I'm glad my son had an opportunity to meet him, as he may be dealing with him some day and at least they have met face to face.

Enjoy the rest of the holidays!

Tuesday, December 20, 2016

Happy Holidays

Just wanted to be sure to wish all of you a happy holiday season. And, a new photo of Ian -- wouldn't you like to know what he is thinking?

I'm seeing a new neurologist this week.  Lots of reasons to change right now -- I sure hope we like him!

My best to you for a happy and healthy new year.

Tuesday, November 29, 2016

Ian has arrived

Ian Lee Bakowski entered the world last Friday, November 25th. He was a week early but we are glad he is here.  His mom had a long labor but everyone is doing fine and they are home from the hospital.  I wasn't exactly sure what I was going to think when I saw my son holding his son for the first time, but it pretty much took my breath away. Thanks to all of you who have sent their well wishes to Ian and his family and to Ralph and I.

Sunday, November 06, 2016


Great job everyone!  Team Athens raised over $15,000.00 for the Athens Walk To End Alzheimer's.  Thanks to everyone who came out, donated and supported us in this year's event.  You are great!

Tuesday, November 01, 2016


I've had a problem in getting logged into this Blog for awhile but now I have been able to get back in, so I hope to be posting more.  Thanks for all your comments lately.  I have heard from so many people that have great questions and need information.  This month is Alzheimer's Awareness Month. Today was actually World Alzheimer's Day.  I've had lots of requests to speak recently, but all have required some pretty long distance travel.  Usually, that isn't a problem, but one required me going to LA one day and returning the next.  With other things I have going on, there just wasn't anyway I could do that.  Traveling takes a pretty good toll on me and I know that those interviews I had to turn down, were covered by very capable people. I'm glad that Alzheimer's is getting some news time.

We had our annual Walk To End Alzheimer's.  I was so proud of my team -- we raised close to $15,000.  Our Walk in Athens actually surpassed its goal this year for the first time in many years.  So excite about that and thanks to all of those that donated, walked and gave your support to my team.

In about a month a new Bakowski will be joining the family.  My son Alan and his wife Jennifer Lee are due with a baby boy.  We are looking forward to this joyous occasion.

Communication has become more of a problem for me.  I find it much harder to talk on the telephone, preferring emails or skyping with family.  It helps for me to be able to see the person when they are talking. 

I plan in the next week or so to share some new reading material about Alzheimer's so stay tuned!

Friday, August 26, 2016

Two months

has been a long time to post.  I have gotten a lot of comments and emails lately about my journey with this disease so I will try to go back a little to give some perspective to it and answer some of the questions people have asked.

Question 1 -- What were your first symptoms?
I began having problems at work -- I was the manager of a 2,000 seat performing arts theatre and found that after 8 years I had problems doing familiar tasks, multi-tasking, trouble with working with numbers and dealing with season ticket holders and staff.  I first thought it was stress and being tired but I finally went to see a doctor when my symptoms got worse and I found myself somewhere and didn't know where I was or how I had gotten there.

Question 2 - What kind of tests did you have to determine your diagnosis?
I had about 8 months of testing which including all the usual lab tests, blood work. Then I had a spinal tap and that showed a build up of tau in my brain (which cause the tangles in your brain with this disease) and also a gene that carried the Alzheimer's disease.  I also did intense neuropsychological testing.  I was "lucky" from the standpoint that I was diagnosed at an extreme early stage of the disease.

Question 3 - What kind of medicine are you on?
I take Exelon (patch) and Namenda.  I have some other medicines I take that are off label that help with some of the symptoms.

Question 4 - How are you still so functional?
I get this question a lot.  I know many people that have been diagnosed longer than I have and are more functional than I am.  As I said, this was caught early in the disease process and I personally think that makes a difference -- although medical personnel may disagree -- that is only my take on it.  I work at it -- try to stay active both physically and mentally.  There are many many things I cannot do and I won't go into them but I struggle just like everyone else.  It isn't easy -- but I do the best that I can.

It has taken a lot of effort to put down on paper what I have just written.  I used to do this with such ease and now after many hours thinking this through and writing it out several times (with help) I was able to get it this far. 

I appreciate everyone's comments and only hope that if you or someone you know is dealing with this disease that you get help somewhere -- there are lots of resources out there. I work closely with the Alzheimer's Association but there are others as well.  Check them out on the web and get some advice -- it doesn't cost anything to do some research and ask a few questions.  It has helped me and helped my family.

On a lighter note -- we are expecting our first grand child this fall -- and I am hoping that I will be able to enjoy the little one for a long time.