My name is Sandi. I am now a 33 year mother of four. Starting sometime in 2003 or 2004 I began having *issues*. They were really what I considered fairly minor in the beginning. My family and I moved into a pretty big house. It was a beautiful house but it was an older house with what I considered a fair amount of dust in it so I wasn't too surprised when I developed an itch in my throat. I had allergy or hay fever issues before, so I didn't pay too much attention to it.
The very first real incident I remember is when I was being tickled by my husband. It's a pleasant memory but something odd happened. I began to wheeze a bit. This was not normal for me. I started to feel a little wheezy and when he hugged me I gagged, or choked a bit. We both kind of gave each other a funny look but of course blew it off like it was nothing. I realized little things about me. Tiny things that I didn't think were too big of a deal. When I would bend over to clean the bathtub out it pressed against my chest and it made it a little difficult to breathe. It wasn't so bad that I couldn't do it, but enough to notice something was odd. I noticed bending over to pick something up blood rushed to my head and I felt like my head would explode, as though I had a terrible head cold. I then began feeling a very weird lump in my throat. It felt like someone had their thumbs pressed into my neck lightly but it was a constant all day sensation and it felt so annoying.
I went to the gynecologist for a regular check up and he said he felt a nodule in my throat. He suspected thyroid nodules. I was sent in for a thyroid sonogram and I indeed do have four thyroid nodules. It explained everything for me. I was relieved. I now knew what was wrong or so I thought. I had sonograms on my thyroid ever 3 months. I constantly complained about the pressure in my throat to my doctor. I was eventually sent to an endocrinologist who told me the same things. I had a fine needle biopsy on my thyroid which is a not so pleasant experience, but bearable as long as you don't have a fear of needles. I had thyroid scans done in which I had to take a radioactive pill. I had blood test after blood test. I kept being told the same thing. "Your nodules aren't big enough to be causing these symptoms." I complained to family, friends, anyone who would listen.
There were other odd symptoms as well. I didn't even honestly think about it until after my diagnosis. I began to develop swelling in my eyelids. I woke up in the morning and my eyes were so swollen I could see the lumps literally. I developed dry itchy rashes on my eyelids! It was the most horrid thing. I felt ugly and gross. I didn't know what was going on with me. My husband was traveling for work. He would have probably forced me to get back to the doctor if he had seen more of it first hand but the doctor prescribed me Elidel which is an eczema medicine for my eyelids. It worked. I was put on Allegra and Singulair for the breathing issues. I was now short of breath and it was always worse at night and when I would lie flat. The Singulair did help. The doctor explained to me later why it helped but at the time we thought I might be developing asthma or severe allergies. I went through more than one misdiagnosis and even saw an Ear, Nose and Throat specialist who sprayed an awful numbing spray into my throat and nose and then stuck a tiny camera on a long hose up my nose and down my throat. It showed nothing. They did a CT scan of my sinuses. I still cannot figure that one out. I had no trouble in that area.
I dealt with these issues and all the prescriptions until 2007. We moved out of that big house so my husband could get off the road. It was a huge move. The house was a big one and I had a very difficult time packing and moving. I felt so tired and lazy. I couldn't carry the boxes without running out of breath. My muscles felt weak and worn out. While packing boxes my sister was helping carry them and I was thinking of how much stronger she was then me now and I felt so lazy and just didn't understand it. My best friend drove by and saw us moving. I knew I looked tired and bad. I was pale and wheezing bad. She later told me she knew something was wrong. I didn't know it, but I was pregnant then too.
We finally got into the new place and I was worn out. I was so incredibly tired. I could no longer lie down flat at all. My family came up to visit for my daughter's birthdays. My two oldest share the same birthday in the middle of March. Finally everyone could actually see that my chest seemed swollen. I am a small person whose clavicles tend to show. You could see the one on the left side of my chest but not the right. The indention you should have in your neck was full and swollen. My sister said she could see it. I felt validated that everyone could finally see what I had been saying for years.
At the end of April I was very suspicious I might be pregnant so I took a pregnancy test. It was positive. I was not super happy because I was so scared. I knew I wasn't feeling right. I didn't know how I would carry a pregnancy to term. I was confused. I wanted to feel excited but I didn't know what was wrong with me.
Finally I got our insurance figured out so I could see a new doctor. I went to another Ear, Nose and Throat specialist who again saw nothing wrong. She sent me to another Endocrinologist. This endocrinologist saved my life but I only saw her once. She immediately saw something wrong. At this point I couldn't even lift my arms to put my hair into a ponytail. My face turned red and I felt like I was choking and my head felt like it would explode. They did another fine needle biopsy and when she did another sonogram I told her I felt the fullness lower. It wasn't right on the thyroid like they always said. I felt it lower, closer to the upper part of my chest and base of my neck. While doing the sonogram she muttered she saw something but it didn't "look connected" to my thyroid. I was a little nervous but not too much. They sent me in for an MRI and called us back the next day for the results. We got there but she wasn't there. They told us it was normal procedure to refer us to the cancer center with any kind of a mass. So they had found a mass in my chest on the MRI.
At this point I was miserable barely having the strength to stand or breathe. We got to the cancer center and I was scared. I told myself I was NOT one of those people. I did not have cancer. I wasn't one of them! I really did say it a lot. I was terrified. I got into the room and it took a long time for the doctor to get in there. He finally came in and sat us down. He looked at us and told me it appeared to be a Lymphoma. It looked like Hodgkin's Lymphoma. I was trying to compute what he was saying but I was confused. I was thinking in my mind, "Isn't lymphoma cancer?" I was trying to focus, wanting to cry, fighting back tears....realizing I was pregnant! What was going to happen? He told us it was a very curable, treatable cancer. He stressed we would do everything to help me and the baby. He got right on the phone with a Cardiac Surgeon because of the location of my tumor. I was in surgery the following morning. The doctor performed his first surgery on a patient sitting up. I couldn't lie flat so we had no choice. I couldn't have any other scans to see if it had spread either because I could not lie down for an MRI and I was pregnant so I couldn't get any other kinds of scans. I had the surgery and was in ICU. I needed a blood transfusion after surgery. I felt horrible. I couldn't swallow or breathe and I hurt everywhere. I learned later I had a chest tube to drain fluid from my chest and the surgeon said he took about four coffee cups full of fluid out during the surgery itself. I had anesthesia that made me sick and I stayed sick throughout the rest of the pregnancy and cancer. I always felt nauseated. I threw up and dry heaved a lot.
My husband was there through it all. They made him sleep in another room but it was such a blessing that they did that! My 3 older children missed a lot of school but they were all so understanding as was my husband's job. They did a sonogram on me the morning after surgery. The baby's heart was beating strong. I was about 7 weeks pregnant. She had made it through the surgery and was still going strong.
I got out of the hospital and a week later they confirmed it was Hodgkin's. The sample they took from me was so hard they couldn't cut through it. They sent it off to the Mayo Clinic where they made the official diagnosis. I was so scared. I was pregnant and I had cancer. I never even thought this could happen. I was sent to a specialist in St. Louis Missouri where they confirmed the diagnosis and suggested I have a therapeutic abortion. I looked at her and asked if my life was in danger in any way if I carried the pregnancy to term. She said no. She told me that she thought it was best since we didn't know for sure if the chemo would harm the baby. I needed to start it right away. We could not wait until second trimester when they suspect it might be safer. She didn't think I would make it 3 weeks to the second trimester. She thought it would be emotionally too hard on me if I had a baby born with problems. I looked at her and my husband and told them both I could not do that. I could not do it because I wouldn't be better anyway even I beat the cancer. My baby had just as much of a right to beat this cancer as I did and my husband agreed. So we pushed on, fighting this cancer for me and my baby.
My surgery had been May 4, 2007 and my first chemo was on May 22, 2007. It lasted for about 3 1/2 hours. I had 4 drugs. The chemo regimen is called ABVD. I worried the whole time about hurting my baby, not knowing what kinds of risks there could be. I had read some things online and found nothing. I saw risks of cleft palate and other minor things but nothing major. I had seen many instances where the babys were fine. I had hope. I found a website called pregnantwithcancer.org and was paired up with a woman who had the same cancer and a 2 year old little girl who had went through chemo while pregnant and everything just like I was. She was my support person. I was so happy and thankful to have someone to talk to. We e-mailed and talked. I had her to talk to whenever I had a question. I was so thankful I found this site! You should read some of the stories on there if you have time. It's amazing but chemo may not be as dangerous to pregnancy as once thought.
I had 12 chemotherapy treatments in all. I had my last treatment on October 23rd 2007. The baby had been checking out out fine through it all. My 2nd to last chemo treatment however did trigger some preterm contractions. I spent 5 days in the hospital and had to be life flighted from one hospital to another in case the baby was born. I was 30 weeks along. I was so scared. I was put on a magnesium drip after being given steroid injections for the baby's lungs and then given some injections to stop contractions which did not work. The magnesium gave me the worst headache and acid reflux of my life, not to mention how high I felt. It was awful. Finally the contractions stopped. I had my last chemo and the contractions started again but they were able to stop them in one night this time. I went home and then waited. I had non stress tests on baby once a week in which she checked out perfect each time.
I was to be induced at 37 weeks because I needed to start radiation December 3rd. She was due December 13th. The doctors wanted me to have time to recover though between chemo, delivery of a baby and radiation. So the induction was planned. The baby didn't care. At 36 weeks she decided it was time.
I woke up to go to the bathroom at about 3 a.m. I lied back down on the couch instead of walking back up the stairs to bed. I rolled over and half asleep thought I heard a pop. I kind of openend my eyes and thought to myself it could be my water. I had already had 3 children though and my water had never broken prior to labor. I didn't feel any fluid so I just blew it off and went back to sleep. I rolled again and then I felt a small gush. I opened my eyes and thought to myself it could be my water. I was slightly panicked but unsure. I sat up. I felt nothing more. I went to the bathroom and wiped up and thought I'd walk a bit and see if anything else happened. I took two steps and that was it. I was gushing fluid. I freaked out. I was four weeks early! I was still in shock and disbelief as well. I had no pants on and walked all the way upstairs to my bedroom, turned on the light, stood next to my husband, tapped him on the shoulder and said "ummmm honey, I think my water may have broken."
No sooner had the words left my mouth than he was gone and there was an empty side of his bed. I looked down at my leg slowly and saw a tiny bit of blood so I knew it was my water. He went into super dad mode and started gathering up the kids out of their beds and telling them to get dressed. He got them into their coats as I put on my pants crying that they were getting soaked. I had NO idea my water breaking would be quite so bad. I was drenched but luckily we lived about 2 minutes from the hospital. We got there and they checked me in. We lived 2 hours from any family. We had planned the induction at a children's hospital in that same area. It specialized in premature or births with issues. I was nervous. I was in labor but had no contractions yet. I was life flighted to the other hospital. My husband had to take our dog to the kennel, drive my kids 2 hours to my parents house and drive 45 minutes BACK to the hospital I was life flighted to. I got checked into my room around 6:45 a.m. My contractions started getting bad around 9 a.m. and my husband finally got there with my mom around 10 a.m. I got my epidural right when he got there. My husband was so tired at this point and I was feeling pretty good actually with the epidural that he drifted off to sleep in the chair next to my bed. My mom was there though chatting my ear off and pretty excited really. We knew it was a tense moment but I had faith my baby would be ok.
My blood pressure kept dropping very low which made me nervous but really we did ok. I pushed for 10 minutes tops and Gabriella Faith was born at 6 lbs. 2.8 oz on November 17th, 2007. I named her Gabriella because it means "Strong by faith in God." Jason my husband liked the name and after we knew the meaning we knew it was meant to be. I chose her middle name because it took a whole lot of faith to get through all of this. She needed no NICU though we had a whole bunch of preemie docs and special doctors there in the room. She cried before she came all the way out of me. She was healthy and well, perfect in every way. She came home in 2 days with me from the hospital. I started radiation when she was just a couple of weeks old. I had 17 treatments every single day except the weekends and holidays. It was Christmas time, so I did have that time off. I finished my treatments and had my first clear PET scan in February of 2008. I have had several follow ups and am still cancer free. Gabriella turned one just recently and is a huge fan of Yo Gabba Gabba. (I always wondered if she thought they were saying her name because I called her Gabbi Gabbers) lol She's a big happy girl. She waves and smiles at everyone. I get stopped in the stores and restaurants because she's smiling and waving at everyone.
I have my next follow up on January 22nd. I hope to get the same good results I have gotten from my last 3 follow ups. I have a follow up every 3 months. It will eventually taper off to every 6 months, then every year forever pretty much. After 5 years I can be declared cured. I still get pressure in my neck and sometimes feel a lump in there but it comes and goes. It's enough to make me paranoid but I think it's just things I have to get used to. I have scar tissue in my chest that will always be there. The tumor had wrapped itself around my major veins and it cannot be cut out. My doctor said I could have had a stroke or heart attack at any time. I had lots of fluid around my heart and so many issues, that I don't think I'll ever feel like I did before but compared to that I still feel so much better. I can breathe. I can inhale and breathe in deeply without it hurting. I can hold my baby girl in my arms. I hear her call me mommy and I look into her eyes and I never take one moment for granted. I am so blessed and thankful and happy that I got through it all. I had a strong support system and such love from my family and most of all my husband who took on the job of husband, and caregiver to me. He became the mom and dad of our household because I couldn't get out of bed. I couldn't eat. I lost weight. I was 92 pounds when I found out I was pregnant. He went anywhere to get me anything I thought I could eat. I gasped and wheezed all night as I slept. I caught him watching me twice. I woke up and he was there, staring at me, watching me sleep...making sure I didn't die. I love him and thank him for taking such good care of me and never letting me believe I would die. I got through it and had the strenth because of him and my girls who also had to grow up too fast. My oldest daughter washed dishes, brought me food and helped clean house. She was just 10.
I don't take a single day for granted anymore. I do have faith though that anything is possible. I have a wonderful family and a beautiful healthy baby girl!! Thanks for taking the time to read my story. I sit here and feel I have left so much out yet this is so long so I will just end it here. My story has a happy ending. I am a cancer survivor and a mother to a miracle baby.
Hi Sandi ;-) My Name is Jamie I am 42 yaer old guy from Liverpool UK ! wow your story is beautiful, congratulations on the birth of your Daughter, Best wishes to you and your family for the future keep smiling ....Jamie :-)
Wow, Thanks for posting your story. I was looking for an article on skin rashes when I found your piece, and then started reading it because we have the same name. I was crying by the end of it, I was so scared for you both. I'm so happy that you and Gabby made it! So many people don't. Like my friend Connie. She left behind a wonderful husband like yours and two kids.
God was really holding you in the palm of his hand.
So I pray that God will fulfill his special purpose in you as he continues to bless your beautiful family.