The updates LeeAnn shared with friends & family...

POSTED BY ANNA

Hi everyone! This is Lee Ann's daughter Anna (aka Little Lee Ann). I wanted to make this website so that her friends and family everywhere can stay connected to her and support her throughout her journey. Lee Ann was diagnosed with gastric cancer this February and will need chemotherapy and surgery over the next few months. I will try to post updates on her as often as possible. I'd love for people to use this website to write her notes to remind her how strong and loved she is. Thank you for supporting Lee Ann and our family during this time. If you have any old photos of my mom or with my mom, please feel free to add them to remind her of all of the happy times and amazing people in here life (and bring an extra smile or laugh 😊)

POSTED BY ANNA

This Friday Lee Ann met with her oncologist for the first time to discuss her treatment plan. From her diagnostic laparoscopy and PET scan, they have diagnosed her with stage 3 stomach cancer. She also had a procedure immediately after this appointment to install her port for chemo - she has been such a trooper these past 2 weeks through many procedures, scans, and doctors visits. 

Her first chemotherapy session will be this upcoming Wednesday - please keep her in your thoughts and prayers. She will have 1 chemo session every other week for the next 2 months, followed by a full gastrectomy, then 2 more months of chemo. While she has a long journey ahead, we know how strong she will fight. 

Your heartwarming messages mean the world to my mom and our family, and are lifting our spirits as we start this difficult journey. My mom sends all of her love and thanks to her amazing friends and family💗Nico is home from Memphis, so she will have her whole family with her for the next few days as she begins chemo. 

We will try to post more frequent updates on here so that you all can continue to cheer her on and keep her strong!

POSTED BY ANNA

Please keep Lee Ann in your thoughts and prayers to give her strength for her first round of chemo tomorrow! Our hearts are full being together as a family as she begins this long journey ahead 

POSTED BY ANNA

Lee Ann had her first chemotherapy session this past Wednesday (3/8), and was able to be surrounded by her family for it. After a few hiccups - 2 mild allergic reactions and a bleeding port later - she finished her treatment Thursday evening and has been in good spirits. She stayed so strong despite the rather stressful first experience. She was also lucky enough to have a lovely nurse - we couldn't have asked for a better person to guide her through her first chemo. She has the next 10 days to rest and build up her strength before her next session on March 22. Please keep her in your thoughts and prayers, and send her strength 😊  

This weekend Lee Ann's sister Eileen and husband Chuck came to visit her, and it made her day! We are so grateful to have the most supportive and loving family  

POSTED BY ANNA

Lee Ann will go for her second chemo infusion tomorrow - please keep her in your thoughts and prayers! Her blood cell counts are very low, but they want to continue with the treatment to keep her on course so she will need to have a shot of neulasta on Friday to boost her body's blood cell production. She will definitely be fighting extra hard the next few days, and we hope that she will not have any allergic reactions in tomorrow's session. She could use some extra strength and words of encouragement right now. My mom is so appreciative of all of your support, you keep her going! 

Lots of love, 
the Lindsays 

POSTED BY ANNA

Hi everyone, Lee Ann will have her next appointment with her oncologist and chemo infusion this Friday and Saturday 4/7-4/8 at Hopkins. She did well during her last dose of chemo 3/22 but unfortunately had more side effects over the first 4-5 days that were a bit more intense than last time. She powered through and is doing well this week, and is grateful to have a couple extra days to recover before her next round. I admire how positive my mom has stayed through all of the hard moments, just reinforcing the fact that she is the strongest person I know. 

Lee Ann wanted me to sincerely thank all of you for the countless positive words of encouragement and moral support you've constantly provided her with whether its been via text, Facebook, prayers, and other messages - she is endlessly reminded of your love and compassion. We are constantly in awe of the thoughtful cards, meals, goodies, visits, phone calls, and many other offers to help. Truly my family cannot put into in words how amazing you all have been. We are repeatedly moved by the amazing people my mom has in her life -  Lee Ann undoubtedly has the best cancer team out there thanks to you. My mom is so blessed to have so many friends and family by her side on this journey.

I'm so sorry for the lack of updates lately - I have been a bit overwhelmed between helping to care for my mom, helping my dad around the house, taking care of the dogs, and balancing my own job. A special thanks to my Uncle Rick, Tracy DeMario, and Rita Misra and everyone else who has helped me as an extra set of hands and moral support. I will try to post more regular updates again after her infusion this weekend. I know many of you were worried since it has been a while, and she was touched by how many of you remembered/reached out thinking that she should have been having her chemo yesterday per the past schedule. 

Wishing you all a very happy spring! If you check in with Lee Ann in the next few days, please help me remind her its important for her to REST and let others do things (I can't tell you how many times in the last few days I've yelled at her to stop vacuuming or cleaning...If you hear the vacuum running at our house please knock on the door to tell her to stop!). Her stubbornness will never wane!

Lots of love,
Anna

POSTED BY LEEANN

Good afternoon —I’m getting ready for my infusion shortly. Had a good consult with my oncologist —she said I’m doing amazing! That can be attributed to all the love and support I have from you all. Thank you! 

I will be here 5-6 hrs longer, back Saturday to finish infusion and Sunday for another neulasta injection. 

Happy Easter and Passover and hello Spring Break for many of you! 

Sending love and hugs along with many thanks for lifting me up during this battle. ❤️

POSTED BY ANNA

Hi everyone - Lee Ann will have her last round of chemo (before surgery) today - we are excited for her to get a break! She had her last appointment with her oncologist for a little bit, who said all of her symptoms and side effects are to be expected/typical of her treatment regimen. 

In terms of next steps, Lee Ann will have a CT scan on Monday May 1st to determine how the cancer has been responding to her treatment. She will be meeting with her surgical oncologist after the CT scan to discuss her big surgery and all that needs to be done in the next few weeks in preparation for it (she will be having her entire stomach removed).

Lee Ann will have about a month between this last round of chemo and her major surgery to recover and gain back some strength. In the meantime, she will be soaking up all the love from her friends, family, and attentive therapy dogs. We are hoping to throw her a little birthday party to celebrate being done with Part 1 of 3 of her treatment, so look out for more details to come soon! If you can't make it but would like to send Lee Ann some extra love, her actual birthday is May 4th. 

David, Ricky, and Anna have been Lee Ann's support throughout this last round of chemo and all of its nasty symptoms, which definitely hit her the hardest yet. She enjoyed a lovely visit from her sister Eileen and brother Frank this past Sunday, and is so grateful to have siblings who make such a long drive just to hang out with her for a few hours! She is looking forward to Nico coming home in a few days to be with her as well.

Please continue to keep Lee Ann in your thoughts and prayers as we know this round of chemo will be even harder with all of its cumulative symptoms which she somehow endures with such grace and a positive spirit. Your constant support continues to uplift and carry her through this difficult journey. Our family is so grateful for the generous meals, visits, and moral support that inspires her each day.  

POSTED BY ANNA

 Hi everyone! Lee Ann successfully completed her last round of chemo (until surgery) last week. Her symptoms were definitely the worst this time, so please keep her in your thoughts and prayers to rebuild extra strength this week.

We'd like to make her birthday extra special this year, so we're throwing her a party! Please join us at on Saturday May 6th at Watkins Park starting ~4 pm. We'll have food, drinks, and games - please RSVP at the following link so we can get an idea for food! If you'd like to bring something, I'll post a sign-up sheet in a few days  

https://partiful.com/e/WvkuYfnVEET5GlNsOaim

If you can't make it and would like to wish her a happy birthday, her actual birthday is May 4th :) 

POSTED BY ANNA

 Lee Ann’s birthday party will be next Saturday May 6th at Watkins Park in Mt. Airy, MD. If you plan on celebrating with us, please RSVP here so I can get enough food for everyone :)

https://partiful.com/e/WvkuYfnVEET5GlNsOaim

POSTED BY ANNA

Thank you to everyone who came out to celebrate my moms birthday with us yesterday! ❤️ We are still in shock by how many showed up, and the distance some of you drove from to spend time with Lee Ann - she is beyond blessed to have so many amazing people in her life and on her team. It was so heartwarming to surround her with her loved ones before her big surgery. I would like to especially thank my moms siblings - Ricky, Franky, Eileen, and Joey - for all of their help in throwing my moms celebration. 

Lee Ann will meet with her surgical oncologist and have a CT scan to see how she is responding to the treatment this Tuesday May 9th. She is scheduled to have her surgery (gastrectomy) on Wednesday May 17th. If you couldn’t make it and would like to get together with her before then, anyone is welcome to come have some tea or food on our covered porch to distract her from cleaning - I mean hangout with her! 

Again, we are still so overwhelmed by the love and support we’ve received these last few months. Thank you so much for showing up for my mom ❤️ if you have any photos from the party you’d like to share, feel free to post them here and/or to Facebook/social media 😊 

POSTED BY LEEANN

Sorry this is late but Thank you so much to all my friends who came to the party last Saturday, you made my heart so happy! 

A huge thank you goes out to all those friends and family who have been supporting me through out this journey over the last three months with cards, calls, visits, meals and gifts…it is overwhelming and humbling to receive so much love and help along the way. We could not do this alone. Right now, my surgery is scheduled for Wednesday assuming bloodwork this Monday is ok and my infection is cleared.  I will be inpatient for at least 7 days recovering from surgery and learning how to eat/drink without a stomach. Anna will update as things progress. 

Sending you all my love and gratitude along with lots of hugs. 

LeeAnn 

POSTED BY ANNA

Lee Ann will be having her surgery (full gastrectomy) tomorrow morning at 7:30 am at Johns Hopkins. We will post updates here as we get information from the surgery and recovery team. She will be staying in the hospital for the next 7 days at least as she will need to re-learn how to swallow, drink, and eventually eat liquid foods. Please keep Lee Ann and our family in your thoughts and prayers as she prepares for her big surgery! 

Much love to all 

POSTED BY ANNA

We want to update everyone that Lee Ann did not have the gastrectomy as planned today. Unfortunately, her cancer has progressed to Stage 4. The surgeons did not see anything of concern during the diagnostic laparoscopy (they do this so that they aren’t proceeding with making the major incision if they see sign of spread), however, when they then cut her abdomen open to start the surgery they found a small mass in her liver that is highly suspicious of being cancerous. This was not detected in her CT scan (unfortunately they cannot pick up tumors below a certain size). The surgeon removed the mass in her liver, but they did not proceed with the rest of the procedure to remove the stomach and lymph nodes. We will need to wait a week for the pathology results from the liver mass to confirm this information, but it is highly probable that it has indeed spread. The treatment team stitched her back up and discussed with us the plan going forward. 

Until we meet with her oncologist nothing is set yet, but she will start some form of chemotherapy again in ~2 weeks once she has recovered from today. The hope is that if several more months of chemo can keep the current tumor in her stomach under control,and most importantly that there is no sign of new growth/spread, then they may consider attempting the gastrectomy in the future. 

This is very difficult news for Lee Ann and our family to process, and we are honestly still very much in shock. We had all hoped today would look much differently, and that the cancer would be removed from her body. 

We ask for extra thoughts and prayers during this time as we figure out what this means for Lee Ann’s treatment journey. Thank you again for all of your love and support. Please be aware we might take longer to get back to you at the moment, but we are so touched by the countless people who have been reaching out. 

POSTED BY LEEANN

This week has been rough as the reality set in for us all —pathology confirmed the liver mass was metastatic adenocarcinoma. I have stage 4 cancer. No doubt. It is terminal. The average life expectancy is about a year from diagnosis for primary gastric cancer. I knew it was limited, but hearing the oncologist on Wednesday say it out loud was still a shocking gut punch. 

I will fight hard and hope to break the statistics. To defy the odds. I have always strived to be exceptional—cancer won’t change that. Physically, I am recovering well. Mentally, I am struggling. I went into surgery prepared to fight drastically (for goodness sake, I was ready to give up my stomach to live longer) and be cured, but awoke in recovery to the rug pulled out from under my feet. I am having trouble accepting how radically different the mindset and approach is to treating stage 3 vs 4. Now, I’m readjusting my crown and mindset to fight like hell as hard and as long as I can.  I want to make the most out of the limited time, and to live the best quality of life. I want to make as many memories with Anna and Nico and all my family and friends as I can. So many have reached out and offered so much love and support to me and the family this past week. Thank you all. I can’t express how grateful I am for every text, card, call, visit, hug, meal, gift, etc. I am humbled. I know you will all help me continue on this difficult journey with as much dignity and grace and grit and fight as we can muster. 

I will see my surgeon on Tuesday to ensure my huge scar is healing and make sure I’m physically strong enough (labs) to start treatment this Thursday. The protocol will be a three drug chemo plus immunotherapy (nivolumab) over 3 days every other week for as long as my cancer shows response. I pray it exceeds expectations. Your continued positive thoughts and prayers are appreciated. Love and hugs to you all. 

LeeAnn 

POSTED BY LEEANN

I started the next phase of my journey yesterday. Treatment entailed the immunotherapy (nivolumab) infusion first thing at 8:30am. Followed by infusion of 2 out of the 3 chemo drugs plus iron. I was hooked up w the drug pump by 1pm to deliver the 3rd drug over 48hrs. Home by 2pm feeling tired and having mild expected sideffects. Hoping they stay manageable. I’ll return tomorrow late morning to have the drug pump removed. I will be honest, I was extremely nervous about starting immunotherapy, while it can work amazingly in some patients it also can have adverse events. But I turned that negative energy around into positive action when I enrolled yesterday morning before treatment to be part of a study at Hopkins to identify genetic markers that can help identify which patients will respond well to immuno check point drugs like nivolumab, and equally important identify those who may have adverse events. This won’t help me, but I find comfort knowing my data will help scientists provide better targeted therapies to patients in the future. Knowing it may help my loved ones and friends in the future gives me a sense of peace from this unfortunate fate. 

I had an amazing, caring oncology nurse yesterday that helped to make this difficult journey a little better, a visit from a psychiatric nurse to offer support services for me to help transition mentally from running the curative sprint race to this palliative marathon, as well as the incredible support of my family accompanying me. Though it can be difficult, when I’m feeling down, I look for and cling to my incredible blessings of loving and supportive friends and family who drop everything to help make my life easier. I don’t want to list any names today so as not to risk omitting anyone —Just know every little message, call, visit, meal, wellness checks, gifts, grocery/supply runs, prayers and positive vibes,  etc are so incredibly appreciated and helpful. I could not do this without ALL of you. Thank you for everything. 

Love and hugs, LeeAnn

POSTED BY LEEANN

Last Thursday I had an uneventful day receiving immuno and chemo infusions. Unfortunately, I had a significant reaction (fever, rash, tachycardia) later that night and ended up admitted to Hopkins Hospital for four days ( no beds so 72 hrs in the ER acute care center, 24hrs on oncology floor).  I was given fluids to stabilize heart rate, IV antibiotics for colitis and a transfusion for gastric bleeding (tumor). It has been a very rough week physically and mentally. Luckily, Nico could stay with me in the hospital (sleeping in desk chair the first night) and helped advocate for me when I couldn’t. 

I met w my oncologist yesterday afternoon virtually to come up with a plan for next Wednesday’s treatment. She’s added some premedications to hopefully damp down reaction as well as modifying the one drug’s delivery (splitting infusion in half over two weeks instead of the two day infusion at home). I have major anxiety (being real) because the drs can’t really determine which drug (or drugs) is responsible for reaction and bleeding. Hoping this works and I can continue on w protocol. It’s sadly my only real option. I’m not ready to stop fighting. Damn it. 

Your continued good vibes, thoughts and prayers are very much needed and appreciated.  

Cancer sucks. 

Hugs and love 

LeeAnn

POSTED BY LEEANN

This battle has been harder than I could ever imagine. I keep hoping for a positive break, but instead I have been beaten down at each juncture. It’s hard to keep a positive attitude when things go wrong and results are not as hoped. I am trying my best. 

During my last chemo infusion on June 28th, I had another adverse event. This time I had a severe allergic reaction to one of the chemo drugs (oxaliplatin). The reaction caused vasoconstriction and spasms resulting in a heart attack and emergency catheterization. Fortunately, my heart muscles and vessels did not sustain permanent damage, but I’m now on heart medications (chest pain is improving). My team managed the allergic reaction during the four day hospitalization, and planned for me to resume chemo in two weeks (tomorrow) with the other two drugs in the protocol. 

That was the plan until I had a CT yesterday to evaluate the response to this last chemo protocol. Unfortunately, the first line chemo failed and my disease has progressed, especially in my liver. The protocol is now fully stopped, so I will take a break from chemo tomorrow. I am currently investigating all options available in the second line of treatment with my oncologist and family. It’s not an easy or straight forward decision.  I’m also hoping to get a consult with a clinical group at Memorial Sloan Kettering for consideration in a CART-T trial for gastric cancer. 

I am struggling mentally as options are becoming more limited, and results are at best adding months not years as I hoped. My family, of course, is equally struggling and adjusting. David is dividing his time as best he can between job and caring for us. Anna has basically moved back home since March with short visits to her apartment in NYC. Nico is packing up his home in Memphis to move back to MD next week, and his last day at his current job is this Friday (he worked for Shelby County government and must reside there to be able to continue). I hate disrupting their lives, but am grateful for their sacrifices to both be here to support and care for me for the rest of this horrid battle. 

As always, I am grateful for my family and friends continued support physically and emotionally.  I keep fighting with all my might because of you all. 

Please continue to send positive vibes our way, and don’t hesitate to reach out to me, David, Anna and Nico. We may not reply immediately but messages, visits, cards, calls etc help lift us up during those darkest moments. 

Hugs and love,

LeeAnn

POSTED BY LEEANN

Today I am grateful for another day with loved ones, another chance to fight harder, another therapy to try. Every day is a gift.

Today, I will start a new immuno+chemo protocol. Cyramza (immuno therapy targeting tumor blood vessels/infused every other week)) and paclitaxel (strong chemo infused every week).  I am very anxious to start this second line therapy  (it’s a bit traumatic just waiting at the infusion center while bloodwork evaluated recalling the last two adverse infusion events), but I am determined to fight this demon with all the strength and grace I can summon. 

Since my last update, I’ve had an immunology consult and gone through allergy testing last week to know which drug to avoid (I had delayed but clear allergic reaction to the suspected former chemo drug, oxaliplatin. They can not safely test for the immuno mAB but it’s also suspected so eliminated in future therapies). 

I also went to Memorial Sloan Kettering in NYC last Thursday for a consult to explore clinical trial options. I do not qualify for the cart-t trial my oncolgist referred me because my tumor is too large. Disappointing. (Ironically, a month ago, my tumor burden was too small to qualify). But I am having further genetic testing to screen anc identify other potential targets for other trials. The testing will take several weeks and then I’ll follow up w the MSK oncologist on August 31st. 

On positive note, it was really nice to finally get away to visit Anna and Mike’s cute apartment, have a delicious meal prepared by them and tour Williamsburg’s lovely parks. A rare day of almost normalcy. 

Nico is back in Mt Airy!! David flew to Memphis to help with the drive back to MD (nightmare 24hr airport stranding for David due to severe storms). Nico and David are staying w a family friend for the week due to mild cold symptoms and known exposure to Covid. Both are testing negative, but due to my weakened immune system are taking extra precautions. Another hiccup. But I’m so happy that both are back home safely. My heart is complete.  I am also beyond grateful to friends that open their hearts and literally homes to help us during the rough patches.  

Thank you to everyone for calls, texts, cards, gifts, visits, meals, positive thoughts and prayers. You all are so amazing. Thank you for lifting us up. I could not fight this battle with out all your love and support. 

Love and hugs,

LeeAnn

POSTED BY LEEANN

Yesterday, I had my weekly chemo infusion. It went well (much better than last week), because I lucked out with the best nurse (the nurse, that I wrongly judged as uncaring my first day of chemo in March, turns out to be the right balance of caring, talkative and punctual to the millisecond).  

My blood count barely made the cutoff for infusion limit, so next week’s immuno+chemo treatment may be delayed and likely dosage reduced going forward. I really don’t want a delay or reduction that could allow the fast growing cancer cells to spread further, so channeling all my energy into regenerating healthy wbc, especially neutrophils. 

I have the expected sideffects today—a bad headache, mild body aches, light-headed and nausea, but for the first day post chemo, that’s normal. The next few days I know will be tougher and lower energy level, so enjoying today as fully as I can. I’ve never taken naps (not as child, college coed or new mom, since I felt worse when I tried to nap), but I’ve learned a quiet hour resting (reading) in the afternoon after chemo is a must. Funny, I’ve learned to adapt to more changes in the last 5 months than I had over five decades—Who knew I could be flexible? 

I hope the next few days are uneventful, and I really hope that my blood counts improve by next Wednesday so I can stay on track and not allow this monster any room to grow. I know that my dr at Memorial Sloan Kettering is concerned my tumor is heterogeneous immuno and chemo resistant, but I am optimistic this more targeted immuno and new chemo may be effective at least initially slowing growth and spread. It must be. If you know me well, you know I will always fight to make what I want happen, even if it means I have to move a mountain or two, or in this case “murder” something (it’s ethically ok, they are evil, uninvited and unwanted mutated out-of -control cells)

Thank you all for joining me on this journey and for the many messages, meals, cards, gifts, love and support. You all brighten my day and lift my spirits as i battle to win more time. 

Even in my darkest moments, I know how fortunate I am to have the best family, friends, support network and medical team caring for me. I am privileged in access to the best medical facilities in the world, and in having family that drops everything in their life to care for me. I wish all people, especially fellow cancer patients I see at the Hopkins clinic, had that the same good fortune. But sadly many of them don’t have the support of others or even a home.  I wish there were something I could do to help the patients that I’ve met who are alone for treatment. It feels so inadequate offering a smile and short conversation with the young, struggling homeless patient last week when she really needs more and someone there holding her hand when those toxic chemicals flow through her body. I plan to talk with my social worker this week to see what I might be able to help facilitate at least for that sweet young lady. In the meantime, if you could share your positive thoughts and prayers for my fellow cancer warriors who do not have the badass army of supporters like me, I would be most grateful. 

Peace, love and hugs to all. 

**David accompanied me yesterday and snapped this photo as my nurse started my chemo session. I dressed for success. Purple is gastric cancer support group color, and of course, it makes my Baltimore Ravens fan nursing staff happy, too.   

POSTED BY LEEANN

I completed my first round of the new second line therapy— cyramza+paclitaxel —on August 9th (each round consists of a weekly 3-4 hour chemo infusion for 3 weeks, then one week break).  I’m doing well overall, but the neuropathy, headaches, body aches and fatigue are increasingly bothersome with each dose, although, so far the sideffects are more tolerable in comparison to the previous two therapies. 

Last week was my break from treatment—my body and mind had a few extra days off to recover.  I feel better and have more energy. And my white blood cell counts improved, too.  

I had several followup visits with my team of drs (cardiology, gp, oncology) last week during my break, so I still had to drive into the city and be in the clinic. All visits went well. My oncologist gave me a hug, and said I looked great—that really helped boost my confidence in this treatment plan. The drs were all pleased with my stable lab results, and how I’m managing the sideffects during the first round. 

Today started the next cycle—it is day 1 round #2 of immuno+ chemo therapy. I finished the infusion at 5pm and already feel the chemo “ick”. Typically, days 3 and 4 are the hardest managing sideffects , so I tend to rest more, do less.  

Next week, I will have chemo on Tuesday (Aug 29th), and then I’ll have a follow up consult w the Memorial Sloan Kettering oncologist on Thursday (August 31st) to discuss the genetic testing of my tumor for other possible targeted therapies (trials) there. 

My next CT scan to evaluate effectiveness of this treatment protocol will be on September 11th—9/11 is always an emotional day, this one will be no exception.  I am nervous which is valid, since the last scan in July showed the cancer growing and spreading. But I’m focused on healing my body and spirit, and optimistic that this more targeted immuno therapy which cuts off the blood supply to the tumors along with the stronger chemo are killing the cancer cells and not allowing the disease to progress. 

Cancer does significantly impact my life. But I am determined to live and enjoy each MINUTE as fully as I can. I am living with full intention to make as many new memories with my loved ones as I can, even if they are seemingly unexciting activities like doing puzzles, playing games, painting-by-numbers, watching movies or baking cookies.  Physically, I am limited and can’t do the “bucket list” seen in the movies—how inauthentic would it be for me to skydive now when I’d never wanted to do it before? —It’s not the activity, but the time and interaction with people, especially my children, that I crave and can’t get enough of. My bucket list is not Hollywood glamorous, but authentic LeeAnn —spending as much time with and caring for my family and friends until I can no longer.

Cancer sucks, but it’s given me a unique insight and perspective—I no longer question many of my decisions or choices in life, but instead embrace and value the totality of the different paths. There’s clarity. No regrets. I often questioned my career path, but it was exactly as it should be—I modified my dreams, yes, but that change gave me more quality time with Anna and Nico to build the foundation of memories to last them decades when I’m no longer present here. I didn’t know it at the time, but I’m beyond grateful now. 

The challenges over the last six months also made me face the fact that we are ALL vulnerable and “dying”.  More importantly, I had to accept that living is an active, not passive, choice—There is a constant emotional struggle at this disease stage to acknowledging that gastric cancer will eventually win and actively fighting and living fully again. The struggle forces me to question and answer daily what makes my life worth living, especially in the face of death? (Book recommendation to ponder this is Paul Kalanithi’s “When Breath Becomes Air”)

That question is extremely easy for me to answer: my family. I would do anything for more time with them. 

So, cancer, toxic chemical treatment and death be damned, I have chosen to LIVE and do it fully. I will make the most of every second I have left with all my loved ones. I hope my friends chose to live fully and intentionally every day, too. Time with loved ones is the most precious gift. 

As always, thank you for your love and support on this journey.

Peace, love and lots of hugs,

LeeAnn

POSTED BY LEEANN

I had chemo yesterday, and like last week’s treatment, I am feeling the sideffects much more than previous round. Definitely packing a harder punch. 

But this evening was gorgeous, so despite feeling crappy (and cranky),  I pushed a little harder and lived fully doing a short walk at Piney Run with the family and two (of the four) pups. Anna encouraged me to go on the outing, and I am glad she did. It was peaceful and uplifting. More time to reflect on what is most important to me—my family and the special places like this park where we have made memories together for the last 21 years.  I’m exhausted now, but having trouble sleeping due to the extra dose of steroids that I had today to help ward off another vasoconstriction reaction like last week. 

We met with my genetic counselor at Hopkins this morning who has accepted my kids as his gastroenterology patients to track their health going forward due to my and my paternal family’s gastric cancer history. He’s a very knowledgeable and thorough physician and scientist, so it gives me peace knowing they will be taking well care of medically in the future. He ordered endoscopies for both to get a baseline but also since they have reflux and other digestive issues. 

My appointment w Sloan Kettering tomorrow was postponed until September 15th, since genetic testing still being processed and the pathology testing of the liver tumor still ongoing. It’s better to have all the data plus the CT results on 11th to have more productive discussion and planning for treatment. 

I will have next week off from treatment, and will be spending quality time in Ocean City Maryland with the kids and David. I’m grateful that my brother Rick offered to housesit and care for the four pups and one grand kitty while we are away. He’s the best and most helpful caregiver ever who has made my family’s life much easier for the last 4 months. 

Thank you to everyone who has reached out and helped us this week. We appreciate all the support and love more than you will ever know. 

Wishing peace and happiness to you all.

Love and hugs,
LeeAnn

POSTED BY LEEANN

Highs and Lows. It's all part of living with and fighting cancer.  

The "Highs"--we had a wonderful week together at the beach.  We watched several sunrises and one sunset, took short daily strolls on the beach, had difficult but necessary heart-to-heart chats, played board games, did puzzles, painted-by-numbers and explored Ocean City, Bethany Beach inlet and Assateague Island together. I would sit under the cabana and write in my journal on the beach as David and the kids swam in the ocean and made sand-castles --watching the ritual construction made my spirit soar and the memories flood in from our annual trips to Whalehead Beach in the OBX --this gave me immense happiness and peace. My favorite day was our visit to Assateague National seashore, where David and I spent every summer vacationing during grad school. I was feeling great that day and walked all the beautiful nature trails (on the hottest, sunniest day of our vacation). We watched the wild horses grazing far out in the marshes. Then, we went to the beach and relaxed. I made the family promise to visit Assateague and camp at Pocomoke State Park together every year to celebrate my birthday. 

We made many beautiful memories and enjoyed the get-away tremendously, but it was hard to ignore the elephant in the room--the physical changes in me and the emotional impact of the cancer on us all. Tears were shed sometimes as easily as the smiles and laughter flowed. It is definitely a roller coaster ride of intense emotions for everyone in this battle. Fortunately, intense love always fills and surrounds us as you can see in our attached photos.  

The "Lows"--I had the CT scan on September 11th. Unfortunately, the gastric and liver tumors grew significantly (multiple centimeters), and there is more metastasis in the liver and peritoneal lining, as well as a small lesion in my hip bone. I have to quit this protocol since the cancer is not responding to the drugs, and start another therapy.  It sucks. I am crushed. Deflated. Angry. Sad. And every emotion in between--It's frustrating since I am feeling physically stronger and tolerated this protocol well with much better overall quality of life than the previous two protocols. It's also perplexing to my oncology teams as the cancer biomarkers (measured in blood tests) showed significant improvement (both markers were cut in half, one marker is now in normal limits), all contrary to the rapid growth in multiple tumors seen in the imaging.  

My oncologist at Hopkins recommends starting the next line chemotherapy, FOLFIRI, and continuing on with the immuno therapy, Cyramza.  I will start the new protool this Tuesday. Treatment is every other week. Infusion of the drugs takes 48+hrs. The oncologist at Memorial Sloan Kettering agreed fully with the Hopkins' team.  Both oncologists want another biopsy of my tumors to examine gene expression to better plan the next clinical therapy options in the future, so an endoscopy or laparoscopy is planned for later this week or next.  

The reality of cancer for some of us is that no matter how hard we fight-- believe me, I am battling with every fiber of my being every moment of every day since being diagnosed--the cancer often out "fights" us using dirty tricks to win. My cancer is obviously a dirty fighter--I've had some of the strongest, most toxic chemo drugs in 3 different protocols and the tumors thrive and grow rapidly (they are literally flipping us the middle finger in the CT images).  My team is fighting hard to find a treatment to slow the growth and give me as much time as possible.  We are not giving up, but it is becoming increasingly more difficult with each failed protocol for them and especially for me.  I am tenacious and won't give in easily to the cheating-beast, I refuse to concede. For now.  For now, I am enjoying every minute with my loved ones. Every sunrise and sunset. And the changing of seasons, as though it could be my last. 

Thank you to everyone for all your support.  A special thanks to my brother Rick, Joann and Derek, Jill and Ricky, Vanessa and John, and Tracy and Todd for making this vacation happen and an extra special memory for me and my family. 

POSTED BY LEEANN

On September 19th, I started a new chemo protocol. The 4th protocol in less than 7 months. This new strong, toxic 3-drug chemo targets the gastrointestinal tract, and has immediate,  harsh sideffects that started during the infusion and continued for days after. I have an extremely high pain threshold (from years of passing kidney stones) which allowed me to deliver my children without any pain medication. However, I was not prepared for the level of pain the chemo would inflict—this new drug (IRI) had me curled into the fetal position in tears during the 2hr infusion with extreme nausea, abdominal cramping and spasms rivaling the contractions during active labor.  I needed two shots of one medication and another oral one to get partial relief for the ride home. The pain was even worse on day 5 post-chemo at home. The several medications prescribed for relief from this drug did not help. It was awful. I was so sick and nonfunctional. The abdominal pain lasted for a full week, then it started to subside. I started to feel better. More normal. Relief. Mentally, I can accept the really (really) awful, rough week knowing that I will have a good, normal week to follow going forward with this protocol. 

However, on day 11 post-chemo (Friday 9/29), I had a major set back and complication when I developed a pulmonary embolism in my left lung.  The PE is unfortunately the abnormal immune response from the aggressive, progression of the disease. Since I had a fever w uncontrollable chills and tachycardia, the emergency room team also treated for possible infection (based on some abnormalities in labs/plus had passed kidney stone few days earlier) w three different antibiotics. I was admitted immediately and moved to the oncology floor room within 6 hrs—I am beyond grateful to the rapid response and treatment by the amazing Hopkins emergency room team including Dr Ayoinde (who has been my dr for all 3 ER visits).  I am extremely fortunate that the embolism did not significantly impact heart function and/ or my breathing. It took four days/nights to complete testing (echocardiogram, Doppler, CTs) and reach the therapeutic dose of heparin to transition to an anticoagulant for home. Due to my history of recurring gastrointestinal bleeding, my oncology team decided the safest therapy would be twice daily shots of the anticoagulant Lovenox since it has the shortest half-life. Nico volunteered to learn and help give me the injections at home. I am blessed that Nico and Anna are amazing caregivers and are willing to stay by my side every night in the hospital so they could be part of the treatment decision making during the morning rounds. 

I was discharged late Tuesday afternoon (the chemo dose scheduled for that day was postponed to give my body more time to recover). I am so grateful to be home with my family and pups, and to finally sleep in my comfy bed. I will follow up with my oncologist on Wednesday Oct 11th. The next dose of chemo is scheduled for Friday the 13th. At this moment, I’m unsure what treatment will entail that day—will my dr keep the same protocol? Or will she adjust the dose and/or eliminate any of the three drugs ? Will she recommend a different protocol with less risk of additional blood clots/bleeding? Honestly, I dread the anticipated sideffects from the protocol, but I don’t want to abandon or change this protocol so soon. And I really, really, really need/want it to work and stop further growth and spread of the cancer. 

I am fighting and hoping for as many more days/weeks/ months I can get.  I am not giving up.  But this cancer is a relentless, evil monster. It feels like a sick joke, at every turn, there’s another gut punch literally and figuratively. I can endure the physical punches and pain, but it crushes my spirit especially seeing the impact on my family. If only that mama bear anger could beat the f$&@ out of this monster, I’d be cured. 

Please continue to keep my family, especially Anna and Nico, in your thoughts and prayers. I do appreciate and love you all. 

Peace, love and hugs,

LeeAnn

POSTED BY LEEANN

Today is my 31st wedding anniversary (10/17/1992). Unfortunately, David and I weren’t able to celebrate because I have been hospitalized since Friday with gastric bleeding. Instead of having the scheduled chemo infusion last Friday, I was being admitted by my oncologist for a transfusion (2units of blood) and extensive testing and procedures (CT, EGD, Doppler) to stop the hemorrhage. 

I had an endoscopy on Monday morning. The gastroenterology team was unable to address the bleeding since it’s a very large area (entire stomach mass 7+cm), so they then referred me to radiation oncology. I met with the radiation oncologist this morning—she feels confident that her team can help to slow or eliminate the bleeding. I had the simulation and mold made this afternoon, and will start the palliative radiation therapy tomorrow. The plan is to have five treatment sessions, a few days off to recover, then back to the chemo protocol. 

Cancer disrupts many physiological processes, especially the delicate balance between clotting and bleeding. That’s why in a two week period I had pulmonary embolism and then hemorrhage. I was referred to met with hematology group to determine best treatment option for anti-coagulation therapy to stop the clotting (DVTs and PEs) that will not exacerbate the bleeding from the stomach mass. It’s difficult juggling act to prevent sudden death from PE or hemorrhage, and currently a work in progress. I am back on iv heparin for a couple of days. If I tolerate that well, then I’ll be switched to Lovenox injections for another day or so before I can be discharged (estimated discharge date is Friday, October 20th).

Another rough ride.  Luckily,  I have an amazing team of drs and nurses, family and friends caring for me. 

When friends ask what they can do to help, my best answer is please donate blood at your local Red Cross or stop by a blood drive near you. Thanks to all those donating the most valuable gift of life. 

Love, hugs and peace,

LeeAnn

POSTED BY LEEANN

I rang the bell today. I RANG THE BELL. In the cancer world, ringing the bell signifies the end of treatment. I never thought I’d have an opportunity to ring the bell, since I’ll always require chemotherapy as an advanced stage 4 gastric cancer patient. But thanks to the awesome palliative-radiotherapy group at Hopkins, I was celebrated for finishing the radiation protocol today. My radio-oncologist and her resident joined the techs and Nico, and cheered me on. It felt great to have one positive, victorious moment in this difficult battle recognized.

While the treatment was only a week, it was intense, targeting the monstrous tumor consuming my stomach, and condensed so I could resume the aggressive chemotherapy to doubly attack the primary stomach tumor and the metastatic tumors elsewhere. I am feeling the expected extreme fatigue and abdominal pain more each day, which according to the RT team will hopefully peak in a few days, then improve over the next two weeks. Did the radiotherapy work? We will know in time. But I’m hoping it has stopped the heavy bleeding and done some significant damage to the primary tumor to buy me more time to keep fighting. 

I meet with my gastric oncologist tomorrow morning to discuss the treatment plan going forward —modifications to the chemo and anticoagulation therapies. Tentatively, November 1st is the target date to resume chemo if my blood count is in range and hemoglobin stays steady. 

After a week in the hospital, I am so happy to be back home with my family and pups for the last five days— to sit outside and enjoy the glorious sunshine and fall colors, to breathe in the crisp, fresh autumn air, to sleep in my comfy bed and to just “be” in my cozy house surrounded by the love of family and friends.   

A huge thank you to my special friends-neighbors that fed and helped to care for my family while I was hospitalized. I may not have the best luck in this battle, but I am extremely blessed with such an incredible network of friends and a loving family. 

Thank you all for the continued well wishes, prayers, cards, calls, texts and visits. They are very much appreciated and help to lift my spirits back up after every road bump.  💕

Peace and love,

LeeAnn

POSTED BY LEEANN

Today, I restarted chemo after almost 6weeks delayed.  I feel the immediate toxic effects of the FOLFIRI drugs, acutely compounded by the radiation side-effects that started this past weekend. I anticipate the peak will hit me harder over the weekend into Monday. Advanced apologies to anyone who calls or messages me if I do not respond or if I decline visits. I’m trying to stay positive, however, physically and emotionally I am depleted more than I’d normally be to start the infusion. I keep doing what I have to do:  fighting and pushing forward.

The positives that I am grateful for on this first day of November:

• My nurse administered the atropine as first pre-medication along with the steroid, Benedryl and two anti-emetics, and again immediately following infusion which significantly reduced the excruciating abdominal pain from the IRI. What a relief! Thank you, Nurse Michelle. I’m still struggling to manage the nausea, but that’s expected due to both RT and chemo impact. It stinks, but I hope to find the right combination and spacing of meds soon to keep me functional. 
• I was blessed to hear the bell ringing again, this time by another warrior. I cheered happily and proudly for that stranger, a fellow patient who completed chemotherapy. Celebrating another’s victory inspires and motivates me. May this warrior stay disease free and thriving for many, many years.
• But the best part of my day, and most impactful on the quality of my treatment was a visit from Ozzy, the softest, sweetest therapy pup in Maryland! 
• Snuggling and loving on that beautiful pup helped to bring me peace and comfort.  It wiped away all the anxiety I had for the treatment. It also lowered both by bp and heart rate by 25pts. I am so grateful that a young researcher at Hopkins (Jack P) initiated and jumped through many, many hurdles to bring therapy dogs into the infusion clinic. All the nurses remarked how the pup’s presence changed the energy and mood of staff and patients on the floor even though Ozzy only visited with two other patients on my wing (patients who signed waivers and are also participating in study). Photos included to hopefully brighten your day/night, too. 

I’m also including photos from Anna’s birthday celebration this past Friday because they make me happy—I look back at these wonderful moments when I’m feeling my worst. They motivate me to fight even harder. They remind me that I am abundantly blessed with a loving, wonderful  family. This make me smile. I hope they do the same for you. 

Wishing you all peace, happiness and an abundance of love, 

LeeAnn

POSTED BY LEEANN

I had my chemo infusion at Hopkins’ clinic yesterday, and have 15 hrs left to finish my home chemo infusion. I fortunately had another lovely therapy pup visit me during my treatment— Sarah, the 1.5 year old golden doodle, and her mom, Barb, who is a two time survivor of leukemia and a stem cell recipient in 2014. The visit was calming and inspirational from both canine and human, and truly made this long, challenging clinic infusion much better. 

This therapy visit was extra special because I was Sarah’s first therapy patient session since passing and receiving her certification! She was a rock star! ❤️

Barb C shared her passion for art (retired art teacher) with Anna, so again this awesome therapy session benefited my support team as much as me. Barbara has been involved with Hopkins Animal Assisted Therapy at Weinberg hospital for several years with another retired pup named Molly,  this was the first time allowed into the Viragh Cancer Clinic infusion —all the nurses loved Sarah and Barb, too. I am so grateful for this gift to spend time with this therapy team. As their calling card indicates, their mission is “Bringing hope. Sharing love.”  And they reminded us “Never underestimate the healing power of love, compassion, and four paws.”  I can attest to that power. 

This chemo protocol is hitting me hard with the usual sideefects. I’m fighting on.

Fortunately, I have my own therapy pups (Lucas, Livi, Chaski and Levi) to keep the paws-a-tive vibes going at home. You can see how Lucas comforted me through some rough stomach pain and nausea the night before chemo ❤️ 

I want to wish everyone a very happy Thanksgiving. May you find peace and joy with your family and friends, and count all your blessings, especially the gifts of good health and time. ❤️

POSTED BY LEEANN

It’s been a month since my last journal entry. A lot has happened in that time. I’ll start with the good news first. I completed 2 FOLFIRI treatments and celebrated Thanksgiving with my family. Thanksgiving was amazing—I am proud to say that I prepared the entire meal myself and enjoyed the most scrumptious dishes with David, Nico, Anna and Mike (and of course, the three pups sat patiently waiting next to us for their turkey, too). My siblings (minus Joe who was sick) joined us Friday for lunch. I made homemade Mac-n-cheese and ham along with a yummy pumpkin pie mousse. As always, it was a wonderful visit with Eileen, Rick and Frank with many laughs and hugs. 

It was an awesome holiday week as we selected our live Christmas tree from Pine Valley farms (a 20year tradition). Since I have wonky low blood counts and struggle with environmental allergies, we modified our holiday decorations—the live tree is on my covered porch decorated w lights for all of my visitors and neighbors to enjoy. We’ve had such nice weather that I still spend significant time each day on the covered porch admiring my fragrant tree. 

We decorated a lovely, new artificial tree in our family room a few days later over the Thanksgiving weekend. It was fun watching the family expertly hang our 30+ years of treasured ornaments, knowing exactly where mom likes each ornament placed (the first time I didn’t casually move “misplaced” ornaments around). We enjoyed listening to Christmas music (Michael Buble, Harry Connick Jr and my favorite Glee’s Christmas album). It was perfect. Until the overwhelming flood of emotions poured out as ugly sobs as I hung the final, handmade ornaments from Anna and Nico’s pre-school/elementary days. We all hugged and cried together for several minutes, wiping away the tears and kissing each others salty cheeks. 

Seconds before, I was laughing and humming away…  Where did all this emotion come from and why did it have to spill out and spoil this perfect moment? It is just another reminder of the toll this journey has had on my emotional health. And on my family’s. We have all been struggling to stay positive. The kids are aware of the significant sideefects and symptoms I have been dealing with since radiation during this chemo protocol. It really upsets them to see my physical struggle/pain, and now, I burden them with my emotional baggage during a happy memory- making moment. I know how much they worry about whether or not the therapy is working, or if I’ll have another complication or hospitalization.  It’s not fair they live with so much anxiety. 

It is even more unfair that their worst fears, our worst fears, are realized. My cancer has grown and spread significantly during this therapy, despite how harsh and targeted this drug was to the gastrointestinal tract. The CT scan this past Monday (Dec 11th) revealed several new 2.5-3cm masses —one in my right lung (along w several smaller suspicious  nodules—I did not previously have any lung involvement), another in my liver and one new peritoneal implant, and showed the growth of many existing tumors especially the lesions in my liver. Ironically, the radiologist could not assess the primary tumor adequately, so we are waiting for the radiation oncologist interpretations (it looked unusual /not good to my oncologist) . It’s heart breaking news for all of us. 

I met with my oncologist in person on Wednesday. She went through the images from the scan showing the growth and new tumors compared to the previous scans. The two cancer markers analyzed in blood tests tripled. It is hard to deny how bad this damn chemo-resistant cancer has progressed. We discussed options. My oncologist is consulting with other gastric oncologists at MSK and NIH to determine best approach now that we’ve exhausted the 4 approved chemotherapy protocols for stage 4 gastric cancer—FLOT, folfox+novilumab, paclitaxel+ramucirumab, FOLFIRI for a total of 8 different drugs over the last 10 months. Tentatively, I am scheduled to start whatever new therapy the oncologists recommend and agree upon (assuming approved by insurance) on Thursday. Right now, the most agreed upon therapy seems to be Lonsurf, which was approved by the FDA in late 2019 for cancers like mine that are chemo resistant advanced metastatic gastric (or colon) cancers, and adding the immunotherapy ramucirumab back (since it appeared to slow progression based on cancer marker data) . 

I am still fighting.  My oncology team is still fighting to find the best treatment option to buy some time (another few months). But…it’s hard to deny or ignore how many options have failed, how the cancer has spread and is causing more physical symptoms and pain even after the most recent radiation and chemo therapies. I now understand, as much as I refused to acknowledge originally back in May, why the average life expectancy for stage 4 gastric cancer is 1year. 

Despite gut-punch after gut-punch, I will not give up hope. I will continue to fight and to live the best life I can, as fully as I can. I will make as many beautiful memories as I can for whatever time I have left with my amazing family and friends. And that is just what I am doing after I allowed myself a few days to grieve this sad news.

Last night, I gathered with 12 wonderful women, affectionately labeled as  LeeAnn’s Girl Tribe.  My dear friend and neighbor, Tracy organized this magical, special, perfect night at a local winery, knowing that either we would celebrate good news from the scan or she and my tribe would be helping to uplift my deflated spirit. It is exactly the medicine my soul needed to be surrounded by these special (drop-everything-to-help-immediately) friends after the devastating results from Monday.  I am blessed that my tribe extends well beyond this small group and town (btw don’t ever mess with any of my Belmont Babes and Mt Airy Moms, they are all Badass Bosses who move mountains for me 🥰). 

I am privileged to have this tribe and so many incredible friends around the world in my corner—the amount of love that surrounds me along with the huge outpouring of well wishes and prayers from family and friends near and far is so powerful that it literally could cure the world of cancer…and that it one day may do. 

I will end this long post with this is my Christmas wish, that one day, this love and energy from my large tribe will fuel more advances in basic science and cancer research so future generations do not ever suffer from this evil monster. Please continue to share your love and support research efforts for all cancers, because advances in any cancer will benefit us all. 

Thank you all for your continued support and love for me and my family. May this winter holiday season bring you peace and happiness. I pray for a year of good health and good cheer for you and your loved ones. Merry Christmas and Happy New Year!  May 2024 be gentler and kinder to us all than 2023. 

Hugs, love and peace,

LeeAnn

POSTED BY LEEANN

Happy New Year 

I am grateful to have welcomed in 2024 quietly with my loving family. We had a wonderful Christmas together making memories and sharing love, hugs, laughter and sometimes tears. It was a simple Christmas focused on the gift of togetherness and traditions rather than material things. It was the most meaningful Christmas in memory. 

As many of you know, Anna and Nico orchestrated one of the most incredible, special surprises for me this Christmas when they reached out and asked all of you- my family, friends and acquaintances-to write letters and share memories of me.  I am completely flabbergasted and overwhelmed by the outpouring of love in cards, letters, notes, poems, photos, artwork, homemade treats and gifts filling a storage chest, specifically my storage chest from college circa 1985.  (The resourceful kids dug it out of storage, emptied and cleaned, then filled it to the brim and wrapped in Christmas paper-see photo attached). Honestly, I am still in shock.

I choke up thinking about the unconditional love and effort Anna and Nico put in to making this gift happen. I am in awe and so proud. I am also completely humbled by the thoughtful words and gestures shared by every one of you, thank you for making time in your busy schedules to share stories from our past and offer motivation to me now. There have been many tears shed but equally many smiles and laughs as I read each message and cherish the love gifted.  You all are amazing and inspiring! 

Thank you from the bottom of my heart for this treasure. It brings great comfort and peace knowing how I touched your life in some small way.  I wish I had the energy and time to write everyone individually to thank and share all the positive ways my life has been impacted by you—Please know that you have all left a huge imprint in my heart as well. More importantly, I hope you know this treasured gift will help my family heal in time, and keep my memory alive for them (they may learn of a few secret shenanigans, too, thanks to these letters from child/young adulthood  friends). ❤️ Thank you for being part of the greatest gift for me and my family.

On a less pleasant note, the battle continues. I started immunotherapy before Christmas (every other week, so far with minimal sideeffects ), and will have the third dose this Thursday. Since our insurance took a few weeks to approve, I only started the oral chemotherapy 8days ago. (It’s twice daily, two weeks on, then two weeks off.) I am adjusting to the chemo side effects, but I feel pretty crappy (nausea, stomach pain, fatigue). Hoping that the sideffects subside during the break. I had a few disappointing consults regarding clinical trials, but ignoring that and focusing on current treatment Thankfully, I still have letters coming in to read and help me push through the tough days. I’m so grateful to have the positive distraction. 

Thank you for accompanying and supporting me and my family on this journey. Sending hugs to all. 

Peace and love,
LeeAnn

POSTED BY LEEANN

Today is a turning point in my journey as I pivot from active treatment to hospice. One year ago today, on February 8th, I had a routine endoscopy that found a large, bleeding gastric mass. Six days later on February 14th, pathology confirmed the malignancy as adenocarcinoma. Life become a whirlwind of expedited appointments at Johns Hopkins with their gastric oncology team and surgeries, followed by active, aggressive chemo and immuno therapies every other week over this last year. I had hope and fully believed that I could beat this aggressive cancer, to beat the 1year average survival rate. I tried. I fought hard through sideeffects and setbacks. I have exhausted every approved therapy (surgery, 5 different treatment protocols, 10 drugs and radiation) and consideration for clinical trials in the US. I have fought valiantly for a year, but realistically must accept the next stage of my journey as the cancer has grown and spread in the last month, blanketing my entire abdomen and pelvis with many new tumors. Physically and emotionally, I am exhausted by the increased tumor burden and complications (I was hospitalized two days last week for another gastric bleed), and the months of grueling treatments.  I am still in shock how rapidly things changed this last month, but ready to stop the aggressive treatments. 

My hope now is to have the best quality of life possible in the weeks I have left. BridgingLife hospice will come to our home on Saturday afternoon to initiate services and explain what to expect. There are many unknowns, but I do know the services will be  invaluable for both me and my family. I pray the transition all around is smooth and peaceful. 

I hope to update more after the visit. Until then, I am sharing photos from a happier day with my family. Please keep my family in your thoughts and prayers during this difficult time. 

Thank you all for your love and support this last year.

Hugs, love and peace,
LeeAnn 

POSTED BY LEEANN

I started hospice care 2 weeks ago. It has been an awkward adjustment for me—leaving behind the caregivers I have grown to love and depend on over the last year for the unknown. That is very unsettling and scary. Fortunately, I have a very sweet social worker who is helping us all feel more comfortable, and so far the nurses have all been kind and caring. We are settling into a new routine and finding a new “normal”.  

Mentally and emotionally, l still live in denial of the reality of this situation. I just keep going about life normally (to the extent I can with significant pain in this weakened physical state) as though there were not this huge elephant in the room. I think this survival instinct is what keeps my spirit strong, and is allowing me to enjoy life while coming to terms with this next phase slowly. Very slowly.  I am processing, and gaining a sense of control and purpose each day. I have started to make arrangements. A surreal experience for the girl who can’t say goodbye. 

My top priority in this planning has been finding a way that I can contribute to help future cancer patients and prevent others from suffering as I have. As a scientist, I’ve struggled to know that so little research has been focused on gastric cancer specifically, or to understanding why it’s so aggressive and often completely resistant to immuno or chemotherapies. I don’t want another gastric patient to learn that there are so few, limited treatment options or trials that will at best give them on average only 1year from diagnosis. We must do more. We must do better.  While I could not help advance scientific understanding of gastric cancer in life, I can have an impact in the end:  I have enrolled in the Johns Hopkins Research Autopsy Program and will donate my tumors (and tissues/organs impacted) to cancer research programs throughout the University and elsewhere.  Dr Rosenberg is currently working with my oncologist Dr Bever to share my medical history and determine which research groups may be interested in obtaining tissue samples for their studies. My tumors will be sequenced and analyzed, used in studies for drug testing by potentially dozens of groups, and will also be archived for future testing as more new tools become available. This donation brings me comfort and peace, a sense of purpose and action, and more importantly a sense this battle was not in vain, my life and legacy will add value to science. I am also happy the donation benefits the university that has been central to my and my family’s life and education. Here is the link if you’d like to learn more about this program:

https://pathology.jhu.edu/autopsy/research

On a happier note, I partied like it was 1989 last Friday with my family, neighbors and friends thanks to my earth angel, Tracy. Everyone needs a Tracy. Tracy planned every detail (including a peaceful snow storm following the party) and hosted at her lovely home the best 80sdance party to celebrate me. Oh , what a night! We made beautiful memories! The love and hugs lifted our spirits high. The adrenaline helped to push me forward and forget about the pain for a few hours. It was the perfect, most amazing, incredible party!  I laughed. I cried. There were special dances with each kid and David, thanks to Tracy planning with the fantastic DJ. I cried even more. I took silly photos with each of my friends in the photo booth. Reminiscing to every song. Singing along loudly and proudly. Recalling the simplicity of life with my siblings and lifelong friend, Darla, who I danced with to all these 80s songs. I laughed even more. I had so much fun, and found peace thanks to all the love and support surrounding me. I am blessed. 

How lucky am I to be so loved by so many ❤️❤️❤️

Thank you all for helping me and my family on this journey in so many ways. We are so appreciative of all the love and kindness. 

Sending all my love, hugs and wishes for peace to you,

LeeAnn