My story is a happy one. Although, what you read below may not sound all that happy. But, I am happy. Mostly, because I can tell you this story. And, I know that everyone has a story, but I thought it was important to tell mine. I am fortunate. Every day I think about what happened to me and all that my family and friends had to go through. I try to remember not to sweat the small stuff and to live each day to its fullest. But I’m human; I still fight with my kids, get annoyed at someone who cut me off and have days that I just want to lie in bed and watch movies all day. I go to my transplant doctors once a year now. And I love being able to spread hope to anyone who is going through something similar to myself. I am a proud “cancer survivor”. I am a warrior.
I have 3 beautiful children and two puppies. I am a wife, a daughter, a sister, a friend and I am a cancer survivor. I have never let that define who I am. But, I realize that is an important part of who and why I am who I am today.
If you asked me on December 28th, 2010 if “Cancer Survivor” would be a way to describe myself I, like most that are affected, would have answered no. I was healthy, young, and excited to experience all of the joy and challenges of being a mother of 3.
Here is my story.
Back in December 2010, my family, which consisted of my husband, our 6-year-old daughter, 4-year-old son, 11-month-old son, and I went on a family vacation to Florida over winter break. Like many other vacations we had taken before, we had no special plans other than to spend time together and with my parents as well as to visit my grandmother.
We were having a great time. And, after a few days of swimming, and playing and just hanging out, I began to complain of pains in my neck. I thought it hurt because of having to carry my youngest son around all day as he was just starting to walk.
Then…December 29TH. The day my life would change.
We were supposed to fly home that day to New Jersey. However, when I woke up that morning the left side of my neck was swollen to the size of a softball. I panicked a bit, but I didn’t think it was anything serious. Naturally, I took a shower because, in my family, we believe a good shower can take care of most ailments.
This time it didn’t help.
I thought, “maybe I pulled a muscle from carrying my little guy around all week.” I didn’t want the day to be ruined and wanted the kids to be able to enjoy their last day of vacation. However, I couldn’t turn my head and I knew I had go to the hospital to get checked out. My parents took the kids to the pool, and my husband and I went to some hospital, somewhere in Florida. We were pretty calm, which was not uncommon for us. They sent me for a precautionary CAT scan. And we waited for the results. I can remember my husband and I discussing where we were going to eat for lunch. I wanted “Steak and Shake” as we didn’t have one in NJ and it was one of my favorites from my college days.
When the doctor came in he told us that I needed to do a second scan because they saw something on the scan but it was partially in my chest so they needed to check it out, I was still very optimistic not thinking much of it, thinking they were just being cautious.
My husband on the other hand seemed anxious. He would later admit to me that he was told by one of the doctors prior to the second scan that they were concerned it was some sort of tumor and he was besides himself from that news – he lost both of his parents to cancer when he was young. After my second scan we waited for what felt like hours. Until, one of the ER doctors came into the room and plainly blurted out “we think you have cancer and you need to be admitted immediately.” He never even took his hand off the door handle, or looked directly at me and he ran out of the room so quickly we couldn’t ask any questions. My husband chased him down in the hallway and was told, the scan showed some sort of growth in my neck and chest and they were concerned it was some sort of Lymphoma.
I heard my husband, say: “What the hell is that, she doesn’t even smoke.”
I sat in shock; confused and startled by the news I had just heard.
I wanted to leave. I wanted to see my kids and my parents and hug them.
Slowly we rolled out of the ER and I was set up in a room. I didn’t know the name of the hospital I was in or even the city I was in, frankly. And, my whole world was upside down. I began thinking horrible thoughts having no idea what Lymphoma was or what it meant for me. My heart was hollow. My stomach ached. And my tears ran dry.
I was stuck in Florida. I didn’t know who to turn to. And, it certainly didn’t help that it was basically New Year’s Eve, so most of the hospital staff was not even there.
The tests started almost immediately. Poking and prodding and moving from one room to another on the hospital bed. The clicking of the bed wheels became a cadence to me while I imagined what my life was now going to be. Of course, I had no baseline to create my thoughts, so my mind just drifted – mostly to not happy places. Luckily, or maybe not so lucky, we had Google. We became instant experts on Lymphoma – the types, the survival rate, the treatments and everything in between. We read people’s stories until our eyes bled – yet, we did not even know what kind of Lymphoma I had… We just wanted to hear good news, and the stories we read made it hard not to be petrified. We wanted to believe all would be fine; but we really had no clue if that was true.
Making matters worse, we kept getting conflicting news: what it was, what it wasn’t, what it might be. Doctors would be here to explain, there are no doctors available, etc. Then we got more bad news. We were told that the tumor stretched from my chest below my heart into my neck and was pressing on an artery. As a result, we were told I could not fly home because if I got on an airplane the change in air pressure could result in the tumor pressing down on the artery and either bursting or causing a heart attack. I was so scared whether my life would ever be the same or would I even have a life to live?
We called an oncologist we knew in New Jersey and he said get on a plane immediately (after confirming I wouldn’t blow up) and come home. I was loaded up with steroids to shrink the tumor, and spent New Year’s Eve on a plane headed to New Jersey. I breathed slowly. And I stayed calm. My husband and kids sat on the plane, each confused and scared about what was happening. My 11 month old had no idea what the next few years would entail. None of us did. Thankfully, my mother who was so helpful came with us to New Jersey to help out while my father took a plane back to Maryland to get home and then drive up to NJ and bring her some winter clothes as she only had summer attire since we were in Florida.
My wonderful brother-in-law, met us at the airport and drove us home. We weren’t supposed to go home. The doctor had told us to got straight to the hospital once the flight landed. Yet, I couldn’t imagine after spending the last several days in some anonymous hospital not seeing my babies and not spending the night with them. I needed to make sure everyone was settled at home and in all honesty, I didn’t know whether or not I was going to ever be home again. I wanted to shower and have my entire family jump in my bed and cuddle forever. I needed to hold them all tight. I didn’t say it out loud, but I definitely thought this could have been the last time.
Early the next morning, we packed some stuff, I hugged and kissed the kids and headed to the hospital. My doctor was waiting for me and brought me to my new room to live in for a couple of days of testing and learning.
All of the nurses were amazing and my doctor was brilliant. The tests were long and scary. Many required me to be in rooms by myself in the dark for long periods of time, some of the tests were physically painful. My mind had plenty of time to wander. How would my kids get to school, or to dance or eat? I was scared and lonely; no matter that my husband was there or all of the doctors and nurses coming in and out – I felt alone.
Ultimately, we were told I had Hodgkin’s Lymphoma, Stage IIB. I was told I could go home for a few days and then after the weekend I would start treatment which consisted of ABVD chemotherapy.
“ABVD is a chemotherapy regimen used in the first-line treatment of Hodgkin lymphoma, replacing the older MOPP protocol. It consists of concurrent treatment with the chemotherapy drugs: Adriamycin Bleomycin Vinblastine Dacarbazine” For more information click here…
I was also given Neupogen shots which stimulated the production of granulocytes (a type of white blood cell) in patients undergoing chemotherapy that may cause low white blood cell counts.
During this time, in early January 2011, I went for weekly treatments which lasted until April 2011.
Once we found out what type of cancer I had and what the course of action was going to be my husband and I had to discuss how we were going to explain what was happening to my kids. We didn’t want to make them more upset then they had to be or overly concern them with “grown up issues”. My children, well the older two, understood that their Dad’s parents died from “cancer”. So, I found the idea of using the word “cancer” in-front of them at first to be off limits. We decided to give them just enough information as they needed as it came to us. We explained that I had a sickness in my blood and I would be taking medicine that would make me weak and I would have to cut all of my hair off.
The day of my first treatment was terrifying, I had no idea what to except. I wanted to be alone with my husband. I didn’t want to sit in a group Chemotherapy room, I didn’t want to talk with people or see what they were going through. I wanted to deal with my cancer on my own. I didn’t want anyone to see me suffering, I didn’t want anyone to feel sorry for me. When we arrived at the doctors office the nurse told us that there was a private room if we wanted it but she thought the best thing for me to do was to sit in a group room. Even though I was really against it my husband thought it might be a good idea and they said if I was uncomfortable I could switch rooms. I went and had a quick prick on the finger to check my blood levels. I was cleared to begin. I went into the room and I remember 3 other people were there all talking to each other, they were young… one that even looked younger than me. I was seated next to him. It was none of their first times, they had all been at it for a while. The young man I was seated next to introduced himself, he told me his story and how he found out that he too had Hodgkin’s. The people I met in the group Chemotherapy taught me tricks like sucking on jolly ranchers while having the chemotherapy, so not to “taste” the chemo. To drink a lot of water before your blood was taken so that your veins are fuller. From that day forward I would never sit in a private area to have chemotherapy. Sitting with others and being able to talk about our lives and how to live our new normal helped me to fight. I felt like a warrior and the people I met were part of my army.
After about a week of Chemotherapy treatment I decided it was time to cut my hair that was so long it came to about half way down my back… I realized going from that to bald would be a huge shock to my kids, so I decided to get a pixie hair cut. My older son and I looked like twins with my new hairdo.
Then a few weeks later my hair started to fall out; first just little bits on my pillow or in the shower… but then I would wake up to find huge chunks and large bald spots on my head. It was time to go look for a wig and shave my head. I remember going with my husband to try on wigs that looked like my old hair and then crazy fun ones, maybe I wanted to see what it was like to be a red head or have curly black hair. But I ended up ordering one that made me look how I did before cancer, mostly. A couple of days later my wig was ready. I decided to take my daughter, Rylie with me to show her it wasn’t something to be scared of. I remember the greatest part is they gave her all of these fun florescent pink hairclips to put in hair. When I got home I showed my boys. And we thought how funny it would be for everyone to try it on. My kids still remember how my son looked like his older (girl) cousin when he put on the wig.
Days turned into months and the kids understood that on the days I had my “special” medicine that I would be tired. There were new routines, everyone had to come home from school and wash up and get changed into clean clothes before seeing Mommy. We no longer did homework at the kitchen table but instead in my bed where they could be with me. My husband stopped travelling for work as much as he had been and my mother moved in with us. My husband’s family came over all the time baking with my kids and helping to keep everyone’s spirits high, and the kid’s lives stayed as normal as possible. It was an all hands on deck kind of life.
At the end of April it was time for me to have my first PET-scan. I was excited, nervous and just wanted so badly for the treatment to have worked and to move on from the nightmare. It is really interesting and something people don’t really discuss, but most things you do to stop your cancer have the potential side effect of a different type of cancer. A PET-scan is done to see if you have any cancer in your body. They shoot you up with a radio-active injection so that the cancer will light up in your body during the scan. (Oh and the injection can cause cancer and you cannot be around kids or anyone pregnant for some time after the injection). To say the least, hearing all of that is a bit disturbing. But anyways I did the scan and about 4 days later I got a call from my doctor and yay I got a clean scan, the treatment worked! Getting a clean scan means the scans show no signs of cancer. I was relieved, we were relieved, we were on our path back to normal.
As the next part of my treatment, after learning of the clean scan, I had to undergo intense radiation to the areas where the tumor was located. When I began radiation it was crazy because the doctors sat me down to tell me about all of the potential negative side effects including different cancers. As someone who just fought through one type of cancer, I thought to myself, why am I now doing something that can potentially cause other cancers? And of course, I questioned the doctor. So after he explained that the chances are low but without radiation the chance of the Hodgkin’s lymphoma coming back were higher, I proceeded with the radiation.
I never knew this, but in order to do radiation you must get mini pen dot sized tattoos on your body so the technicians know where the radiation machine should be set up to administer the radiation. Yes, I am now super punk with 4 “tats”. The radiation treatments were 4 days a week from May to June of 2011. I luckily had a really good journey with radiation. I used lotion to keep my skin moisturized and didn’t get burnt or tired from it, which I know happens to a lot of people. The day it was over my family celebrated and I was excited to have a nice relaxing summer with my family and start the recovery process. Then, at the end of August, I remember the moment so vividly, my husband and I were sitting in back-to-school night at my older son’s kindergarten class and I touched my right chest bone and felt a hard lump. I stared at my husband with my eyes filling with tears. We went back to the doctor; and unfortunately, the happiness didn’t last too long as my second scan showed the cancer was back and more tumors were growing.
Now it was time to start over. I was scared, upset, confused. I was told that Hodgkin’s was curable; why did it come back and so quickly and so aggressively. How are we going to fight the new growths? What were we going to do, why and how was this happening again? I found out later that in fact a PET-Scan isn’t perfect. A great analogy I heard is it is like looking through a telescope to see the stars in the sky. If you take a telescope and look up at the sky on a clear night you can only see most of the stars, there are some that are behind others or are so small they do not show up. So the cancer never was 100% gone. There must have been some very small tumors hiding that ended up growing during the 2 months before my second scan.
This time there was a new plan. I was going to do some heavy-duty chemotherapy, stay in the hospital for a week at a time then spend two weeks at home. Until I would get back into remission and then I would have an autologous stem cell transplant. “An autologous stem cell transplant uses healthy blood stem cells from your own body to replace your diseased or damaged bone marrow.” You can read more about it here…
At this time, I surgically had a picc-line placed into the left side of my upper chest. I did this because using an IV for the chemotherapy damages your veins and can become very painful. “A PICC line (peripherally inserted central catheter line) is used to give someone chemotherapy treatment or other medicines. A PICC line is a long, thin, hollow, flexible tube called a catheter.”
I was in the hospital preparing my body with large doses of chemotherapy from September 2011 until about February 2012. My friends and family were always there to cheer me on. They would come to appointments with me and meet some of my other warrior friends and talk to my amazing nurses which helped the time move more quickly. During this time, my mother continued to live with us, my husband took on the position of mother and caretaker while running a business full time and traveling to and from NYC to be with me. We were also fortunate to have the most wonderful person, Stacey, also helping us, which brought not only optimism, but some fun into the kids’ lives. The times when I was home I tried to be as involved as possible. Little things I could do made me feel more normal. Dishes, folding laundry or even making music videos with the kids.
In February 2012, once I was more or less in remission, they harvested my stem cells and in March 2012 I went into hospital for approximately 1 month to kick cancer’s ass again. The time in the hospital was difficult, the chemotherapy and different medicines make you very weak, the plan is to clean your entire body from all of the “bad” cancer cells attached to my blood cells but while doing that you must kill the “good” cells too. My hospital is in NYC and when I got there for my month stay the room I had was huge – with awesome views of the city, and the East river. There was a stationary bike that I was supposed to use to keep up my strength. My family would come to visit and we did art projects, or just talked about life. I would try to get out of bed at least once a day and take a walk around the hallway which I liked much more than the bike. But my father really enjoyed the bike when he came to visit because he couldn’t sit still so he would ride for a bit. Which would always make me laugh. There was one day my sister, Dara had come to stay for a night with me from Florida and I was so sick and so down in the dumps. She had never seen me this way so she knew she would have to do something drastic, she called my husband and told him to take my oldest child out of school and bring her to the hospital ASAP, that I needed something to put a smile back on my face. The minute before my daughter walked in my head was under the covers crying from pain and fear. Then, when she walked in, I knew I could never let her see me like that… I snapped out of it. I needed to be strong, I needed to get better, and I needed to be there for her. We spent the afternoon doing nails and her hair and playing card games. It helped me so much that every time I started to feel low, I thought about how my kids needed me to stay positive and smile! As my body became weaker, the days became harder and I knew I had to keep going because my family, my doctors and everyone supporting me needed for me to keep fighting.
My immune system was at zero, which meant I was ready for the BIG day – the transplant. My entire medical team walked and had the bag stem cells with them. It was tiny, like a little plastic that they would hang and put in my picc-line. I was so nervous and my anxiety was so high. This was it; my life saving transplant. The doctors stood around me. I watched everyone staring at me holding their clipboards and one even had a stopwatch to time how long the transplant took. “Here we go”; the opened the portal. I felt nothing. And boom, about 30 seconds later it was over. The doctors said good job and they all turned and left my room. I couldn’t believe that it was the big TRANSPLANT??? It was so uneventful.
Days past and I did my regular but then I started to feel not just tired but really horribly sick. I had sores growing inside my mouth all the way through my throat into my intestines. I could barely swallow without crying. Morphine became my new best-friend, and for a person that would pass out from a half of a Benadryl, that’s saying a lot.
Those times were hard and lonely. I had to write to tell people what I needed or to have a conversation. The pain was exhausting and I spent a lot of time sleeping. I couldn’t talk to the kids. More time past and I started to get better, the sores went away, and my blood levels were coming back… I was getting stronger and I was finally able to go home. I had to be careful who I was around and what type of germs they had. There were lots of rules and masks worn. However, we were able to enjoy life again and each day I started to feel better and stronger.
Then 2 months later, in May 2012, I had another scan, and everything came crashing back down. There were more tumors. I was devastated, when you first get diagnosed with Hodgkins Lymphoma it is extremely scary but there is a specific course of action to take, then once you come out of remission the first time you still have an option or two, then when you come out of remission again and after a stem cell transplant the courses of action aren’t clear. The doctors were trying to figure out what the next course of treatment was. During the next several weeks my husband and I spoke to and visited what felt like every doctor in the world.
One hospital we visited was fantastic and they were participating in trial treatment that could really help me. However, I was then told they couldn’t promise me that I would be getting the actual treatment or a placebo – And I was not willing to take that chance.
At another hospital my husband and I visited and spoke to a doctor that we were told was a genius and was (and probably still is) one of the best in the world. I was highly optimistic that this doctor would save my life. We had travelled to get there and the hospital and his office were immaculate and everything was extremely high tech as compared to some other places we visited. When we went in to meet the doctor and explained my situation, he had already looked over my files. He listened to us briefly and then looked my straight in my eyes and asked if I was prepared to die. I thought to myself, WHAT, prepared to die, this guy is supposed to save me, not prepare me to die; I had 3 kids at home and a husband that needed me. SO I straight faced looked at him and said, NO! No I am not prepared to die, I knew it was a possibility, however if I was prepared to die, I believed I had given up. He told me my children would be fine and that I had taught them all that they needed to learn from me. At that point I interrupted him. I said, excuse me but with all do respect, I understand my children will be okay without me, my husband lost his parents at a young age and he is one of the most amazing people I’ve ever met. I know my children will be okay and they would continue to thrive, but for me I need to continue on, I need to fight, I need to be prepared for the fight of my life, not for my death. So thank you for your time. And we left.
Ultimately, we felt most comfortable and safe with the team of amazing doctors in NY that had been treating me. There were some exploratory and trial procedures and drugs that were floating around, and I would most likely qualify for one that the doctors in NY thought was the best option for me. They put me on this new “miracle” drug called Brentuximab and I continued with out-patient chemotherapy. “Brentuximab vedotin is an antibody-drug conjugate medication used to treat relapsed or refractory Hodgkin lymphoma and systemic anaplastic large cell lymphoma. It selectively targets tumor cells expressing the CD30 antigen, a defining marker of Hodgkin lymphoma and ALCL. “
At the time I started that drug the doctors thought it could be a way to buy me more time to hopefully find a cure. The way it was explained to me, the drug works by basically tricking your body into thinking it does not have cancer and it is intended to keep the tumors from growing or spreading. And, the greatest part for me is it didn’t have a side effect of losing hair so my locks started to grow back. While on this drug, I definitely felt a bit more like a person rather than a science experiment. We were told that Brentuximab only had a limited time of working which was around 18 months. This meant, if it worked on me, I would have more time for the doctors to come up with a treatment plan that could work – or even better, new drugs and procedures might come to market that could help me. They were correct on the timing. Almost to the day, I relapsed again.
A neighbor of mine that we had heard of but didn’t really know had the strange and unfortunate coincidence of having a very similar trek to mine. He relapsed several times, was on many of the same drugs and had a failed autologous transplant – and, he had also had a donor transplant several months prior when I was trying to find a patch for me. Unbeknownst to me at the time, he and I were also being treated by the same doctors! And, we both have a shih-tzu poodle! He became a friend and I followed his journey, and many others, and that gave me hope. I learned about all new kinds of treatments.
While on Brentuximab, it was determined that I was going to try a second stem cell transplant using the stem cells or bone marrow of a donor. At first, the doctors sent a swabbing kit to my sister to determine if she could be my donor because she would most likely be the closest match. I was devastated to learn she wasn’t because we thought, if my own blood relative was not a match, how would we ever find one. Of course, each of my parents was a “half” match. This would ultimately be my best option. However, I needed to also try and find a donor either through the national registry or truly, by any means possible – and Smile4Shira was born. (the name was thought of by my daughter because she said Mommy has the best smile and I want to see her smiling again.)
We took to social media and my husband wrote a compelling letter that became a battle cry for us.
Click here to read:
My family and friends hopped into action. Holding swab events at their homes, golf courses, colleges and their synagogues and churches and their places of work. People in my town were spreading the word. My daughter’s dance school held a swab event that I was able to attend and the words of hope and love I felt from my community was such a blessing and only made me want to fight harder, but I still needed someone else this time to help me win my fight. While working to find myself a match some wonderful things started to happen, and we would get word that because of the different events we held others were finding their life saving matches. I felt the need to keep holding events, raising money and help as many people as possible find their match so they did not have to go through the harsh reality of not having a match on the national registry.
Life went on having both good and bad days trying to always keep positive. And doing as much as I was allowed to with my family. Dance competitions, football games, Shabbat dinners. After about 10 months on Brentuximab it slowly stopped working and the cancer cells started to grow again, and we needed to move quickly. Without any match on the National Registry the doctors decided to try a brand new transplant called a haplo-cord, which was new and risky and I would be one of the first to get it.
“Haplo-cord transplants: This involves a combination of donated cord blood stem cells and half-matched (haploidentical) cells from a related donor.”
My mother was my “half-match” and the cord blood was donated from a baby. I went back into the hospital to live for the next month on May 1st 2013. This time having a much heavier feeling that, if this one didn’t work I would most likely die. After a couple of days of intense chemotherapy to again wipe my body of all of the cancer cells, on May 8, 2013 I had my stem cell transplant. Which in all honesty was the easy part for me. If you want to hear what my mom had to say about donating click here:
The next 5 weeks I lived in the hospital celebrating Mother’s Day and my actual birthday in my hospital bed. Losing the little bit of hair I grew back. And losing most of my physical strength. I had a huge need to spend that time in bed helping make sure my house ran smoothly. I ordered groceries online to be delivered to my home, I created schedules and made play dates for my kids. The kids and I would FaceTime everyday and we would send each other notes and drawings through my husband driving back and forth from New Jersey to NYC almost everyday. Although, most of my time in the hospital was boring, blood and weight being taken every morning and evening; special medicines to help me regain my strength and keep any sicknesses away because my immune system was too weak to fight them on its own; and hopefully being physically able to wash up and get changed for the day. I had my regular nurses and doctors that I loved. The amazing cleaning lady who would come in everyday singing. But there was one night that shook me to the bone. My husband needed to sleep home to be with the kids the next morning before school (and he probably needed a good night’s sleep not on a hospital foldout chair). Anyways, my mom stayed over with me. My picc-line had 4 line connectors that could have 4 different medicines/chemotherapies going at the same time. But, there was a specific medicine that was not allowed in one of the lines and there was a huge red sticker on this line to remind every doctor and nurse not to place it in that specific line. And, at around 1 am that morning a new nurse, really nice guy, came into my room to give me my medicines. Next thing I know the entire medical team is in my room because he accidentally put the medicine in the “off limits” line. Oh no, what was going to happen?! Well, from what they told me there was a chance for the medicine to crystallize in my blood stream which would block the blood from flowing in my body. So, they had to flush my system and push saline through the picc lines at the fastest pace possible. It was so scary and the saline bags running through my body were cold and I could feel it running through my veins. My mother tried to calm me with the only way she knew how… to rub lavender on my feet! (This has become a family joke – when in trouble, rub lavender on your feet!) It was helpful, but I was freaked. I called my husband who was trying to rest for one night away from the hospital and he was calm, but I was freaking out feeling helpless. It all worked out. And after a few hours which seemed like years the whole ordeal was over. Nothing crystalized and I am still here. Days passed and I kept up on my routine until finally it was again time for the BIG transplant day… but this time I knew what to expect. They were in and out in about 2 minutes – boom. And, this time we were ready for the sores. There was a trick I had learned since my last transplant. I had to eat ice pops right after the transplant for a couple of hours. And as much fun as that seems, it actually becomes tedious, and your mouth and insides start to freeze which is the whole point. We were counting each popsicle stick like I was trying to win the July 4th hotdog-eating contest. But, magically, or scientifically or whatever, I didn’t have sores this time around.
After this transplant I wasn’t allowed to go home as quickly. So the days and nights and routines continued on. I was very weak; standing up for the bathroom or to take my weight was a big deal. Finally, the day came that they were ready to release me. I was terrified not to have the nurses and doctors down the hall if I needed them. But they believed I was strong enough and it was time to go. After my time living in the hospital for my haplo-cord transplant I had to move into a special apartment across the street from the hospital for about two weeks. This was so if anything happened they were able to treat me right away. And because for the first two weeks I had to be at the doctors office everyday to get medicine and have my bloodwork done. I remember the day all three of my kids came to see me. I could barely move but I wanted them to see that I was doing well. And I so badly wanted to go home. So I got up and went outside to walk with them on the NYC summer streets. It was a sunny beautiful day. The kids ate ice cream and I sat and watched. So happy to be there, with my family, in the fresh air, alive.
Once I was able to come home it took a long time for me to be able to walk up and down the stairs with ease and build my strength and immune system back up. Along the way I contracted Pneumonia, Neurotrophy in my toes and fingers, Chronic bronchitis, Shingles, Asthma, Hypothyroidism, Accelerated menopause, and Osteopenia.
But I wouldn’t and still will not let any of that bring me down. I celebrated my 1st re-birthday in 2014 and it was a huge milestone. My kids thought it was the funniest thing that I was “younger” than them. We had hats and streamers and cake. We continue this tradition every year and every year I tell the kids I am catching up to them. At first I went to the doctors every 3 months and had PET-scans twice yearly and after 3 years I started seeing the doctors twice yearly and 1 PET-scan a year. Then at my 5-year check up I got the good news that I only had to come once a year and no PET-scans unless something in my blood-work is off or I feel unwell.
Smiles4Shira continues to save lives and hold swab events. In 2017 my daughter took over the social media and has started different campaigns to get the word out there and get more people, especially young people, on the national registry. My older son has now started to help and is putting together flag football games and golf tournaments to raise money to pay for the swabs to get tested and be put on the registry and to get people to swab. My youngest is helping by making us laugh each day and keeping us focused on the importance of family time. And my whole family continues to support Smiles4Shira.
I am excited for the future of S4S and I look forward to continuing to work with my family, friends and the S4S community and making sure that there is a hero to match every cancer patient who needs it.
My story is a happy one. I love being able to spread hope to anyone who is going through something similar to myself. I am a proud “cancer survivor”. I am a warrior.