Shutting the Door on 2024

It has been a while since I blogged mostly because I have been balancing living and extreme fatigue. As I shut the door on 2024, I wanted to highlight a few great things from the end of the year....

In September, I attended and presented in person at the NARA Annual Seminar in Minneapolis. I flew there and can not say enough good things about how helpful TSA and Delta were navigating the airport in my wheelchair. Also, I am very thankful to my friends and colleagues who helped me on-site.

In October, I traveled to Tallahassee and Jacksonville for both work and medical meetings. 

In November, mom and I took our first fun vacation since 2016. We traveled to Laurel, MS to visit the location of Home Town. The people of Laurel were so welcoming and the Napiers have done a tremendous job bringing lift to the town.

We were very luck to see Ben filming in the shop and thanks to his wonderful store manager Mike, I received a very special gift of a signed piece of wood and a big wave and smile from Ben.

We took a tour with DJ to see all of the homes that had been renovated on the show as well as some of the history of the town.

We spend time in the local art museum, which included beautiful exhibits. We ate at local restaurants and spent time shopping in all of the stores.

Mom and I look forward to our next trip.

I have spent a lot of time in Jacksonville working through some issues. Currently the cancer is remaining stable, which is great news and hopefully we will figure out the rest of the things. I spend a lot of time resting and napping. 

One fun thing we did as a family this year was build puzzles for Christmas. Mom got each household an advent puzzle. 

Mom had the family over for Christmas. This was the morning snack before our traditional lasagna dinner with eggplant parmigiana, Italian sausage, salad, and garlic bread.

Mom and I also built Lego Gingerbread ornaments for the little tree.

      

After the holidays, I had a pedicure (one of my gifts from mom). I used my new OPI Wicked Nail Polish. This was the first pedicure in almost five years (my last one was in February 2020, green for St. Patrick Day). 

Meanwhile, the cats are enjoying their Christmas gift from mom, a new sofa. 

As I try to stay warm while I am working, Pancake and Flapjack help. Pan has decided that sleeping on legs is the best place to sleep.

While 2024 did have some low spots in the roller coaster ride, I am choosing to highlights the positives. That is one of my goals of 2025, to find the bright spots amongst the gloom. I am going to do my best to stay up-to-date on my blog, begin to work on my book, focus on growing some of own professional skills, and do my best to be a productive member in my community.

I am ready to thrive in 2025!

For tonight . . . I'm just sayin' XOXO

Sometimes You Get an Email You Want to Share

I received the following email this weekend and wanted to share these thoughts because I think they are so powerful.....

TOP TEN REASONS TO VOTE By Jack Levine - 4Generations Institute

- To honor those in our military who courageously fight for us and our law enforcement officers, firefighters and emergency workers who respond to our needs and defend the peace at home. Those who sacrifice their personal well-being in the name of our safety and security deserve our respect. 

 

- To honor people who struggled for civil rights, women’s suffrage and the ideals of justice for all whose diverse voices are essential for our nation’s moral health and community vitality.  Freedom needs affirmation.

 

- To be a good example to our children and grandchildren by exercising the right to vote as a symbol of our faith in democracy. By voting we send a signal of the importance of the choices we as adults make to secure a better future for ourselves, for our children, and generations who will follow.

 

- Voting is our society’s great equalizer. No matter our station in life, income, ethnic heritage or social status, every citizen over age 18 has the same power of one vote.  

 

- Pollsters do not determine who wins elections; voters do.  Predicting the outcome of elections, especially close ones, is at best an inexact science. Pollsters and political pundits have their roles, but like each of us, they only have one vote.   

 

- Elections should not be about negative ads, it should be about the options we have to promote positive policy actions.  Voting for candidates in whom we believe, and for or against ballot initiatives we know will affect our future, is a perfect counterbalance to the flood of negativity polluting the airwaves and filling our mailboxes. 

 

- While voting is now a bit less convenient than in previous years, access to registration information and early voting are still available for people who want their voices heard.  Democracy is a team sport….and spectators simply don't count.  

 

- It's vital to be an informed voter. Pay attention to news reports and editorials about the campaigns. While how we vote is confidential, the fact that we have voted, or failed to vote, is public record.  Elected officials know which individuals and demographic groups are voting, and we who do vote are more likely to be influential in policy debates. Non-voters are voiceless and by not participating can become victims of their own neglect.

 

- Regret is preventable. November 6th is one day too late, and "could have, should have" are sorry alternatives to acting.  Have a “no excuses” attitude by committing to vote, ask others to join us in voting, and promote a positive approach to making a difference among family, friends and colleagues.

 

- Be part of making history.  Because every indicator points to the prospect that the 2024 election will have impact for years/decades to come, every vote is even more important.  As a Floridian, I know how close elections can be!  Being a participant in affecting history gives each of us a sense of pride in participation and the power to touch the future.

 

I can remember going to vote with my mom at a young age. I have voted in every federal election since I turned 18 and the majority of local elections. To this day, I love getting my I Voted sticker. Before COVID, I always went on election day because I loved seeing all the people voting. Now, I drop off my ballot but still get excited to see the people. I have several friends who work the polls and I am thankful for their service.  As of the time of this post, there are 65 days, 19 hours, and 45 minutes until the polls close. Please remember democracy is on the ballot!

For tonight . . . I'm just sayin' XOXO

Proud Childless, Cat Lady

The fact someone would use the words childless cat lady as an insult infuriates me because of the disrespect it shows. Furthermore, it astounds me how low the morals of individuals can be, but it is more disappointing a group of people consider this acceptable behavior.

There are many reasons someone may not have children, but ultimately, it is no one's business but theirs. Having or not having children has nothing to do with the competencies to succeed in a career.  For some, it was a choice; for some, the timing did not work out; for some, their body did not cooperate; for some, it was the state of the state of the world; and for some, it was to break a family cycle. There are many people in my life who do not have children. Regardless of the reason, these people are successful and entitled to participate in democracy.

I do not have children. This was not my choice. At age five, the treatment for my cancer left side effects negatively impacting my chances of having children. I came to peace with this at a young age. I decided post-graduation, I would consider fostering. Someone very close to me discouraged this because of how difficult it would be to only temporarily build a relationship; they were correct because anyone who knows me knows how much I value the relationships in my life. I pivoted to the next plan... post-doctoral graduation, I planned to begin the adoption process. I passed my defense and was starting the research for the adoption process when I got my new terminal cancer diagnosis. Not having children does not make me any less of a person. It allowed me to do other things I would not have been able to do. I was able to teach teachers who impact the lives of hundreds of children. I trained child care directors to operate quality child care programs for communities. I volunteer for national organizations to promote policies to protect and support children. To say I have no say because I have no stake in the country because I do not have children is ignorant. I have dedicated my career to making a better world for children and preparing them to take our country to the next level. This is not the first time I have been told that since I do not have children, I am not allowed to have an opinion. I, like every other childless person, has the right to have a voice in the future of our country.

This rhetoric is ridiculous because if it was true that means people could only do things directly impacting them rather than weigh in on issues important to them. Maybe this is a matter of someone not being properly educated on what democracy means. Let me try to help, democracy is a system of "government of the people, by the people, for the people (Abraham Lincoln, our first Republican president)." This is typically done by citizen voting in local communities to select individuals to represent us at a city, county, state, and national level. Represent us not dictate us. The opposite of democracy is a dictatorship where an individual or small group of elite individuals tell the rest of us what to do and think. America was created as a democracy and every citizen has the responsibility to save our democracy. Whichever political philosophy you align with, I urge you to vote for democracy when you vote over the next few months if you want the future of the country to be secure for the children. The individual policies on varying issues can be negotiated between different groups to find a common ground as we have historically done for multiple decades but only if we preserve democracy.

On the cat lady front, I would have cats with or without children, one has nothing to do with the other. Further evidence of such an ignorant statement. My cats love a box and I love them!

                      

For tonight . . . I'm just sayin' XOXO

Hello 49!

I know I have been sporadic with blog posting lately but that is a good thing, I have been feeling pretty well a bit fatigued but that is my new normal.

Brooke Shields recently spoke in an interview about the importance of reintroducing yourself throughout life so people understand who you are today rather the person they remember you to be. This really struck me so here it goes....

          

Hello, I am Dr. Tara Orlowski. My passion in life comes from teaching and mentoring. I love learning, books, and board games. I am the mom to three beautiful and friendly cats. In 2020, my dreams shifted but not away from my core but more I am reaching it differently these days. Currently, my brain is fully functional but body does not agree. It is hard for me to walk long distances, stand for long periods of time, or sit up straight all day. I get short of breath upon exertion. I am more reserved in my outside of work commitments to protect myself from burnout. I have learned their are limits to energy level but everyday I try my best. Normal Lear once said, "Every day is a new production." I am thankful for what I get to produce each day I am granted. Even though my path changed, my new path affords me the opportunity to spend a lot of time with my mom and I feel blessed. 

Today, Mom and I went to went to see Fly Me to the Moon. It made me think that we have had few positive events where the nation or the world watch with anticipation, which are not born out of tragedy in the last 49 years I have been alive. While I will take any opportunity to bring people together to celebrate, I would like to live in a world with more positives than negatives. So I challenge everyone to think about this: Since 1975, can you think of a national or global positive event that we have rallied together to watch, like moon landing in 1969 that did not begin out of tragedy?

For tonight . . . I'm just sayin' XOXO

Happy Roller Coaster Day

I call today Roller Coaster Day because it is a day of ups and downs for me. For decades, I celebrated May 5 because it was my last chemo day as a child and each year was a year of survival. Then in 2020, another high was include when I earned my doctorate degree, something that had been a huge goal of mine. Unfortunately, May 5, 2020 was also the day I was diagnosed with Mesothelioma. Two ups and one down.

As I sit here today in 2024, I have a lot to celebrate:

• I am 41 years out since my last Wilm's Tumor chemo treatment.
• I am a doctor for the past 4 years.
• I am still alive 4 years after my diagnosis.
  
• I am feeling the best I have felt in a long time.
  
• I am surrounded by an amazing mom, loving family, snugly fur babies, and fantastic friends.
• I am part of a great professional network.
• I am an active contributor to my community and my profession. 
• I am living every day.
• I am laughing every day, mostly at myself.
• I am looking forward to the future.
  

For a rare disease, whose survival rate is low, I am kicking its......

While I am battling a lot of different things, I have found a way to balance things in order to ensure I can do the things that are important to me and find ways to have fun. 

I truly believe attitude has gotten me to this point. I am a fighter who tries to see the positives and not dwell on the negatives. I believe this is the secret to survival.

To celebrate Roller Coaster Day, mom and I are going to see Steel Magnolias, which I think is fitting because it is a movie that causes a roller coaster of emotions. We have been going to the movies a lot lately, which is a good return to normal. It is the one activity I missed most during the height of the pandemic.

For tonight . . . I'm just sayin' XOXO

So Much To Catch Up On

It has been a long time since I blogged, which is never my intent. As my favorite musician once said, it is because I have been out living and enjoying life.

In good news, I am currently feeling the best I have felt in the past 18 months. That wasn't quite the story at the beginning of year and ended up with a quick trip to the hospital in February. I had been sick to my stomach for about 8-10 days and it wasn't going away. Mom suggested I check my blood sugars and they were over 600. We went to the ER where I thought they would give me insulin and send me home but they decided to keep me for a couple of days. My A1C was 12.4 and I had another infection; however, this time there was no sepsis - yay!!!! Two days in the hospital. The coolest part of this hospital stay was running into the parents of two children I had in child care almost 30 years ago. The kids are doing amazing things, clearly because of a solid preschool education.

The urogynecologist doctor told me he never said to come off antibiotics, which is a lie. The new infectious disease doctor does what urogynecologist suggests. Very frustrating. I left them both saying I would have to think about it. The urogynecologist told me I am not to use the portal to contact him nor can I talk to his nurses, I can only talk to him. That is a red flag to me of a doctor trying to cover his ... Needless to say, to date I have opted not to take the antibiotics and I am doing good (knock on wood). 

The endocrinologist wanted to me start insulin right away. I wanted to reduce my numbers through diet alone. Since, it took weeks to get the order straightened out and by that point I had made significant improvements in my blood sugars doing it my way. I was told I would not see improvements for months. The reality was within 1 month I reduced my A1C by almost 3 points. I anticipate I will see even more improvements when I go back in two months.

Mom and I have been going to the movies quite a bit. We recently saw Gone with the Wind, my namesake. I had never seen it. I think considering when the movie was made, it was amazing what they were able to do. Mom and I both laughed at the curtain scene, remembering the Carol Burnett spoof. 

We celebrated my brother's 40th birthday with a lunch for him as we was on his way to his vacation. It was good to get out. We have been trying to do that a bit more.

My pulmonary embolism, which they said would never go away, seems to have dissolved. Since then, my coughing is reduced. My shortness of breath is now back to just on exertion, which is still frustrating but it could be worse.

I have been trying to walk. The oxygen does not do anything for the shortness of breath but it seems to help with the blood oxygen level, a little bit. I do not know that it is worth it. I have a virtual visit with my pulmonologist coming up to see what he thinks.

Work keeps me busy, which is good. I feel thankful that I love what I do and who I do it. Mom is able to focus on retirement more this year, which is good. The house is slowing getting worked on. I have about 100 things I want to do all at once but trying to figure out the priority. The cats are a trip. Pancake has become obsessed with being near me. Flap cannot get enough and he is obsessed with one of the Lego men, he is always trying to get to him. Marmalade just chills but lately she even wants to be be in the recliner. Three cats and me - it is quite a sight.

For tonight . . . I'm just sayin' XOXO

Saying Goodbye to Lynn

Last Thursday night, my stepmom Lynn joined my dad. She had been battling several illnesses for a long time so this passing brings her peace and comfort. 

Lynn entered my life over thirty years ago when she met my dad. She had a small business and did interior design work. That is where she met my dad. She was painting a space and he was doing construction. They came from different worlds but found love in each other. They eventually got married. We embraced each other immediately.

I always remembered that Lynn was always put together. She loved clothes, shoes, and jewelry. She gave me a beautiful cat ring several years ago so that I would remember if something happened between my dad and her. She loved her engagement ring from my dad wanted me to have it so I had a piece of their love. There were lots of times I wondered why she loved him so much because he wasn't always the nicest but she saw past that. We used to talk a lot about my dad. 

Throughout their relationship, her and I shared lots of stories about family, the Island, her past, and her love of animals. She had a love of cats that was larger than life. She had an orange cat, like mine, named BC (birthday cat) for years. She loved BC. Eventually BC passed but was never forgotten. When they moved to Knotts Island, she fed all of the stray cats. And there were hundreds. She loved them all. No one loved cats more than Lynn. She was so compassionate for animals and would feed the cats over herself. Lynn loved her granddaughter. She brought so much light into her life. Family was important to Lynn. She was a private person but never around me. She was honest with me and we had lots of candid conversations. 

When my dad passed, she and I were able to console each other. It was very hard on her. She cared for him in his final months, which wasn't easy but she loved their time together. I was grateful he had her. She missed him every day so I know she is very happy to be with him now. Her heart was broken when he passed. We always connected on his birthday and on his passing day. 

I will miss Lynn but I have wonderful memories of our time and I am glad she is finally at peace.

These pictures were from one of the last times we were all together. It was right before my dad began his final months. My mom took the picture. All six of us had a wonderful afternoon together.

For tonight . . . I'm just sayin' XOXO

Happy New Year...Published a Little Late

It has taken me some time to post this blog. I have been extremely fatigued lately so there have been lots of naps.  I look forward to saying goodbye to 2023. It was a year of frustration. It was another year of facing the end of lift but fighting hard to come back. After 2020, each year I thought would get better but that has not been the case yet. I have high hopes for 2024. 

Mom and I spent the holidays just the two of us but embraced the days with yummy food and lots of laughs (two of my favorite things):

Thanksgiving

Christmas Eve

Christmas Morning

Christmas Dinner

 

New Years Eve

Medically, I am doing OK. The pulmonary embolism seems to have added the cough back into my life and made my shortness of breath worse as well as my blood oxygen levels. We tried an inhaler but that did not improve anything. We are going to try oxygen for when I am doing activities that exert me, like walking, doing dishes, unpacking, just about anything outside of the recliner. In terms of the infections, we are now in a wait and see mode as December 31, which was my last dose of antibiotics - will twelve months of antibiotics do the trick?

The thing I am most thankful for in 2023 is my mom. She fights for me every step of the day and without her, I would probably still be on a machine. I hate that she has to watch me be so sick. We are determined to have a 2024 filled with fun and positive activities. We did accomplish unpacking all of the kitchen boxes that were in the house. There are a handful of things that were not in those boxes so I suspect there is a box or two in the garage. We will see! The guest room unpacking has started so people have a place to stay that want to visit. 

I had a year of wonderful friendships....old and new. There were lots of laughs with family and friends, which I think keeps me moving forward. I am so blessed to be so supported. I watch the world around me with so many people who have no one, I feel so bad for them. I do not take any of my relationships for granted. Let's not forget, the lots of snuggles with my fur babies.

 

As I go into 2024, I have decided to try to reduce my screen time and take up hobbies like puzzles, diamond art, and Lego building. I did centerpieces for both Thanksgiving and Christmas.

My mantra for 2024:

2024 looking forward to what's in store!

For tonight . . . I'm just sayin' XOXO

Happy 2023 Festivus!

This is one of my favorite holidays....Festivus.

 There will definitely not be feats of strength for me but boy do I have grievances to air:

• Lack of compassion or interest in the medical community

This year stunk! Six hospitalizations, countless doctor appointments and tests, two weeks on a vent, more antibiotics and medicines than I have ever been in my life. At almost $1 million in bills, there are still no answers. To be honest, they stopped looking after just a few tests. No one seems to care about finding an answer. No one seems interested. The doctors are so focused on their only area of expertise and no one is willing to open their mind to new ideas. They barely get to know the patient or what is happening. My mom and I have had to work so hard to keep me alive this year that I am still waiting for our paychecks. It is amazing to me how many medical people complained to me this year about how rough it was for them and everything going on with them. Seriously?!? It is time for people in the medical profession to begin listening more, caring more, and paying better attention.

• Lack of customer service and the waning work ethic

Where do I begin? How hard is it to put the items you ordered into a bag? If it is food, include a few napkins and straws. It seems that across the board it is getting more difficult to find people who care about their job. As an identified workaholic, this is just something I do not understand. It is time to demand good service. We have to stop accepting this as "it is what it is." It doesn't have to be this way. 

• Lack of values in politics

It is said in the new Wonka movie, "The greedy beat the needy every time." I told my mom, we need to create a shirt that says, "Stop the greedy beating the needy and Vote!" Congress should be ashamed of going home this holiday season, they have accomplished very little. It is time to put their agendas first. Our founding fathers created a structure based on a balance of power and representation of the people. While it wasn't perfect, it was done with good intent. It is time to return to governing for all people, not just a few. We must demand more from our elected officials. It is not too late to get back to a country united and living up to our pledge.

Amongst all of my grievances, I have not lost faith in humanity. I am surrounded by so much love and support, which is never lost on me. This love got me through some very dark and stormy days this year.

One of my favorite pictures of Mom and me! This picture speaks to the strength of our relationship. Not every day is unicorns and rainbows but we are undoubtedly connected deeply. We are always there for each other. I wouldn't want to go through this journey without anyone else. We have endured all of these grievances together this year but never stopped being able to laugh and find joy throughout the way.

 

My mantra for 2024:

2024 looking forward to what's in store!

For tonight . . . I'm just sayin' XOXO

December Medical Update

The last few weeks have been a whirlwind with doctors. Overall, things are stable with me. 

The cancer is relatively stable. There is evidence of small growth but it is within the margins. I continue to ask and stay on top of them because while it is tiny, I know this is a slow growing cancer so we will most likely not see big growth but I do not want to be blindsided ignoring the small growth. 

The kidney stone is still there but it has not grown or moved. The doctor increased my medications and added a new one. 

The lungs are causing lots of coughing and shortness of breath. Palliative care added a new medicine, which is the first thing that has helped my coughing in three years. Pulmonary is trying to get oxygen approved by the insurance to see if that will help.  

The diabetes is starting to be elevated.  It has been slowly ticking up this year. I am working to get that number down. I am on two steroids, which I think are contributing to this. Additionally, antibiotics can also impact the numbers.

The infection is still under control with the two antibiotics. I come off antibiotics at the end of next week so we will see. I am concerned because my blood work has shown elevated white counts  the last few draws but no one seems to worry about it. My most recent blood work also showed a decreased red blood count. I am very fatigued but there are several factors that could be contributing to that so we are just watching everything closely.

I will not lie that mom and I are anxious to come off the antibiotics but we will just take it one day at a time. Meanwhile, the cats are taking good care of me. They do not leave a lot of room for me in the chair but I am bendy so it works:

For tonight . . . I'm just sayin' XOXO

Thanksgiving 2023

As the Thanksgiving weekend comes to a close, I wanted to take a few minutes to post to the blog. Mom and I answered our annual question of what are we most grateful for - this year we were more thankful than usual to be able to celebrate the holiday together. I am very thankful for my mom, family, and friends. 2023 has been rough but in true fashion, we keep fighting to see another day. 

This year I took on creating the centerpiece. I have been trying to do more things that are not in front of the screen so I built the Lego centerpiece. Next up is two Wonder Woman Lego sets and then the alligator. Mom cooked a delicious meal, which we both ate too much. She also made her apple pie, which is the best in the world! Her Christmas tree is up and ready to go. Next weekend, we may tackle mine after I put the Halloween decorations away. We have one last thing to unpack and then the kitchen/dining room will be done. After that, we will take the orange guest room. Slowly but surely we are getting the house organized. 

This week we head to Mayo for a day of appointments. Then two weeks off and we are back there for more. Never a dull moment around here but it beats the alternative.

  

For tonight . . . I'm just sayin' XOXO