May 31, 2019 Latest post:
Sep 23, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Hi my dearest family and friends,
Many of you have had questions for updates so I thought I would start a CaringBridge to help keep everyone updated.
2019 has been one of the most trying years of my life as I was diagnosed with Stage IV Hodgkin's lymphoma but one thing that I have learned through all of this is that I must keep my faith and fight like hell.
We now think that my symptoms probably started closer to 5 years ago but were unrecognizable to a healthy 25 year-old. However, the most noticeable symptom came about during my pregnancy with Evee. Approximately 8 weeks into my pregnancy, I developed a terrible itch all over my body. It would often wake me up at night and I would catch myself itching all the time. Eventually, I had itched several lesions all over my back and abdomen that would bleed. I brought it to the attention of my OB/GYN who assured me that the itchiness I was feeling was normal for pregnancy, however, she ordered labs to test for cholestasis and referred me to dermatology . All of my labs were normal, and a skin punch bioopsy was negative so they decided I was experiencing PUPPS which is a pregnancy condition that develops with a rash and itching. I saw a dermatologist and was prescribed several allergy medications and creams but nothing seemed to help. I was told to wait it out and that it would resolve itself after I gave birth. My pregnancy got quite complicated after we found out about Evee's condition and we soon became overwhelmed with appointments for her and my condition fell by the wayside.
After giving birth, we were very busy with Evee including an open heart surgery and several consultations and doctor's appointments. The itching continued for several weeks after giving birth. I continued to see a dermatologist who told me something new every time I saw them. I was told that the itching would stop after the postpartum period (6-8 weeks), then when Evee was 6 months old and eventually when my hormones returned to normalcy....after I stopped breast feeding. At 7 months, I made a very difficult decision to stop breast feeding to make the itching go away. At this time, my dermatologist also prescribed photolight therapy 3 times per week. The itching slightly subsided but did not go away.
During the entire postpartum period, I also experienced significant weight loss. I was down approximately 60 pounds from my pre-pregnancy weight. I brought this to the attention of my OB/GYN who told me that because of my milk supply, I was not consuming enough calories and to eat more.
In October I noticed 3 enlarged bumps on my neck and a sinus infection. After seeing a different doctor, they claimed that the bumps were likely lymph nodes and were enlarged because of the infection and that they would return to normal within a month. Weeks went by, my itching was not improving, I continued to lose weight despite eating more, the lymph nodes were not shrinking and I began to experience day and night sweats and unbearable insomnia despite Evee sleeping through the night for months. In November, I had my wisdom teeth removed with no complications and great healing. December came and we were busy with the holidays but I was exhausted and miserable.
I finally made an appointment with a primary provider to get medication for my insomnia on New Year's Eve. My provider was not available so I saw someone I had never seen before, a breath of fresh air. She listened intently and thought maybe I was suffering from a thyroid abnormality. She ordered a thyroid ultrasound, more labs and a chest X-ray just to cover the bases. I had the chest x-ray and blood work that day. Blood work came back normal once again but I had received a call from the provider saying that the chest x-ray revealed lymphadenopathy and recommended a chest CT. The thyroid ultrasound was completed on January 2nd and determined that my thyroid was normal but that I had several enlarged neck lymph nodes. Next, my doctor ordered a PET scan and biopsy. The PET scan was done the next day and the biopsy was scheduled for January 7th. The PET scan confirmed my worst fears. I had several glowing nodes in my neck and chest, a lesion in my lung, several nodes in my abdomen and likely bone marrow involvement. The scan also revealed a mass in my pelvis. The next few days were a blur. Monday, January 7th came and I had 1 lymph node excised from my neck and sent for biopsy testing. I also had an MR to review the mass in pelvis which was later determine to be a benign cyst, thankfully. On Wednesday, we learned that the biopsy came back as classical hodgkin's lymphoma. I met a hematologist that Friday where we discussed a plan. She assured me that the itching, the insomnia, weightloss and every other miserable feeling was related to the Hodgkin's. I also learned of a symptom that I didn't think could have been possibly related to Hodgkin's, alcohol sensitivity. This is the symptom I had had for 5 years that I didn't even think twice about. After a lengthy consult we decided on a treatment plan. I was to start a chemotherapy regimen called ABVD, every other week for 6 months at an attempt for cure.
That following Tuesday, I received my first dose of chemotherapy that I tolerated quite well. After receiving my first dose, I made the choice to keep my life as normal possible. I made the decision to work on the weeks that I didn't have treatment and do as many activities as I could to enjoy the time with my family and friends. My husband, mom, dad, and the rest of my family, and closest friends were by my side every treatment. Soon after I completed my first cycle of treatment, my itching had gone away completely, I started sleeping again and gaining weight. The nodes in my neck started to rapidly decrease. I couldn't believe how wonderful I was feeling. For the first time in over a year, I was able to exercise. I was able to run and thanks to all of the wonderful people in my life and gracious donations to a Gofundme page, I was able to get a Peloton bike which I have enjoyed so much every morning that I feel good.
After I completed my 2nd cycle (4 treatments), I received a follow-up PET scan that revealed a significant decrease in the nodes in my neck and chest and the lesion in my lung was nearly gone. Unfortunately, I had some nodes in my abdomen that were responding very slowly or not at all. We decided to continue with ABVD, hoping they would start to respond. I was still tolerating treatments well with some hair loss and nausea. The only side effect that was becoming difficult was vein burning.
At the end of April, I was cleared to travel to Punta Cana for the wedding of one of my best friends. We had a wonderful vacation that was complication free and I still felt great. After returning from Punta Cana, I had a port placed since the vein burning was not improving. Just 2 weeks later, I had another PET scan that revealed some discouraging news, the nodes in my abdomen were still not responding and the nodes in my neck/chest were beginning to come back. At that time, the plan was made to start a new chemotherapy regimen and to prep for a stem cell transplant.
I was referred to the reproductive team to evaluate the state of my ovaries for fertility preservation. Although ABVD was not going to affect my fertility, the chemotherapy administered for the stem cell transplant does. The bad news continued to come, we discovered my ovaries had gone dormant that there was no way for the team to harvest my eggs for preservation in hopes of our future family. Our only option was to administer a shot to keep my ovaries dormant and enter my body into an artificial menopause and to hopefully protect my ovaries and eggs during the next steps of chemotherapy.
I started the new chemotherapy regimen this week and will hopefully try to post updates as the come. I am so grateful for all of the outpouring of prayers, support, love and help I have received and for my family and friends staying by my side during this difficult and trying journey.