Diagnosed at 35, Stage 3
My name is Sonja and I am 36 years old. A year ago last summer, I began having chest pain, kidney pain, heavier periods and other odd symptoms. The best way I could describe it was, I felt "toxic". My body was telling me something was wrong. At the time I was 35 years old.
I had a physical last July and my PCP did a pap, breast exam, and blood work. All results were normal. I expressed to her my concerns. She first referred me to a cardiologist. I went and saw this cardiologist. At my one and only appointment with him, he said "I believe if it's not your heart, it's your lungs." He ordered an echocardiogram and 48 hour heart monitor. My heart was good. He reviewed results over the phone and no other real follow ups planned.
A couple days went by. I felt like I was in limbo and everything was checking out good but I was having such odd things going on. I worked in healthcare, at a local hospital. One day at work, I just decided to call my pcps office. I spoke to the nurse, ultimately asking for a chest x-ray to be ordered. She wasn't the easiest person to deal with because I wasn't having "symptoms" that would require this kind of test. She also wanted me to be seen but I told her I didn't want to pay the high co pay. She spoke to my doctor and I was able to get it approved my my provider. I went and had the x-ray done right then and there. I just felt like something was wrong.
The chest x-ray showed a couple tiny spots on my right lung. I was told, most times, a radiologist would overlook these spots, because they were so small. Im so grateful this radiologist was so thorough and didn’t let it go. The radiologist recommended a CT of my lungs. I had that test done. I was then getting a call saying the spots were not coming from my lung, they were coming from my right breast and now the radiologist was recommending a mammogram and ultrasound. Mammograms are not ordered, preventatively, until a woman is 40 due to insurance not covering it so this was going to be my first mammogram. I was up to date on my physical, blood work and routine checks for lumps in my breasts and again, everything normal.
I went and had the mammogram done. I went on my lunch break. I remember the day like it were yesterday. I checked in and was asked to put a Johnny on like a jacket. I was then explained by the technician what to expect and the mammogram was then performed. The technician would take a set of pictures then leave, then come back for more pictures. This happened several times. I became nervous. My stomach had that sour feeling, like something was wrong. I was then being asked to go in a cool, dark room for a breast ultrasound.
The technician applied the jelly on my breast and began taking pictures. All I could see were lots of colors on the screen. She then left the room and got a radiologist. This woman viewed the screen as she moved the wand around my breast. She wiped the jelly off of my chest, sat me up and said "I'm sorry to have to tell you this, but you have three masses in your right breast and it doesn't look good."
I said "really?" She said "I've been doing my job for 30 plus years and I can tell you that from what I see, there is a 5 percent chance of this not being cancer." She offered to call my family or a friend for me as I cried and continued to ask questions. She told me the next step would be to biopsy the masses. I did say to her many times I would do anything to stay alive for my little girl and I would make sure her life would not be negatively affected. To be honest, after discussing the results with the radiologist, I remember getting dressed, walking to my car, calling my husband and parents to tell them the news. I don’t remember anything else from that day.
It was about this time my when my husband Ryan, who is 38, began having some weird symptoms of his own. He is a senior master automotive technician for ford and was having a hard time performing his job. He was exhausted beyond belief, he was tripping, dropping tools, his extremities on his left side, became numb, very weak and very painful. Ultimately, he was told he was overweight by a doctor that he had never seen before and was told that he probably had carpal tunnel. No imaging was ordered. We began losing weight together and we even bought him wrist splints to see if that would help his hand. Ryan's symptoms worsened, terribly. It was so bad that I was having to help him get out of bed and with many daily activities. I truly couldn't understand what was going on with either of us.
I then had my biopsies. On September 27th I was diagnosed, while taking care of primary care patients full time, with invasive breast cancer. Three masses broke through my breast wall, towards my right lung. It was also brought to my attention that a lymph node under my right arm pit looked suspicious on the last imaging that I had done after the biopsies. The radiologist who diagnosed me with cancer said I needed an additional biopsy. I was bummed. I remember being at work getting this news and I could barely breathe. I'm actually grateful I was at work because my coworkers called my family. I felt completely numb and debilitated. I just wasn't sure how I was going to tell everyone.
I remember my mom picking me up, my dad got my 3-year-old (she’s now 4 and a half) at daycare and my mom brought me home. My parents kept my daughter overnight and I broke the news to my husband. I don’t remember much after that. I probably went to bed and I know I called out of work the next day.
I was then going in for another biopsy. The radiologist who performed all of them was beyond fantastic. He was so gentle and so kind. When he took the biopsy, he told me right then and there it was cancerous. He did send the lymph node to pathology and it was confirmed that the cancer had spread to my right arm pit. Everything after that happened fairly fast. Ryan's condition was getting so bad that he went back and saw our pcp. She sent him to a neurosurgeon. He ordered a MRI of his cervical spine.
All of a sudden, I found myself and my husband and parent's, meeting with my surgeon, medical oncologist and radiation oncologist. I was told that my cancer was her 2 positive and that it was quite aggressive. It was about a week apart that I was having chemo training, just having my port placed and was starting 16 rounds of aggressive chemotherapy when Ryan was getting his MRI results. He was diagnosed with severe cervical stenosis. His spine was in fact collapsed, allowing no spinal fluid to circulate properly. We were told he needed major neck surgery or he would die. We were told that he needed to be very careful until surgery or he would be paralyzed. Neither of us could fathom the news we were receiving. His surgeon was shocked with how long he was able to perform just his daily activities let alone working on cars. His job, like mine, is very demanding. His job is much more physical though.
I began chemo. I went to the payson center every Wednesday for the first 12 weeks. During that time, I was receiving, in my port, dexamethasone (steroid), herceptin, perjeta (both breast targeted medications) and taxol (chemo). My hair started falling out after probably by my 4th treatment. My husband ended up shaving my head. It was less painful and less emotional to have a buzz cut vs. Having my hair fall out, especially In the shower, that was the worse. I was very emotional.
I was pretty sick on this regimen. I worked for about a month, taking care of patients and then had to go out on fmla. It was happening all around the holidays. Ryan was also not able to work. It was like our worlds were crashing around us. We couldn't let it though. We had our daughter Penni to fight for. I was having so many symptoms. My entire body felt restless, heavy and tired. I was getting frequent bloody noses (never had one in my life), diarrhea, nausea, vomiting, headaches, neuropathy in my hands and feet, changes in my taste buds, sensitivity to light and sound.
Ryan had his surgery. He ended up needed c4-c7 fused. He required 30 staples in his neck. During this time, while he was hospitalized, I began the second part of the chemo protocol. I was going to the Payson Center every other week for four weeks. While there, I was receiving dexamethasone (steroid), the herceptin and perjeta (breast cancer targeted medications) and A.C (chemo). This chemo is so potent I had to sign a waiver saying I understood it was flesh eating. A nurse had to push this chemo through my port by a syringe, rather than from a bag dripping. I was very sick VERY sick on this regimen. No matter what, I was staying hopeful, appreciative, and positive.
The chemo put me in menopause. Any symptom that comes with this, I got. I'd have to say, the hot flashes were the worst. (This month, I have come out of menopause. This has been awful. I've had to experience two periods, lots of cramping, and emotional issues from hormones. I have a message out to my medical oncologist as I would like to have my ovaries removed. I truly think my cancer was from a hormonal issue. Ovaries are what produces hormones. I'm beyond fearful of getting cancer again. I'm also having similar symptoms that I was having when I was diagnosed.)
Ryan was released from the hospital. I was his main caregiver and he was mine. We were not able to keep our daughter in daycare due to the cost so we were taking care of her full time as well. Ryan and I cant thank my parents and sister enough, for all their support and help, especially with Penni. Ryan was receiving in home physical therapy. I finished 16 rounds of chemo on March 22 and had surgery on April 19th.
I went into surgery with my pink wig on. I remember the staff loving it. I thought I was going to have a lumpectomy (the chemo worked so well it shrunk the masses substantially so I didn't need a mastectomy), and a lymph node resection (3 or 4 lymph nodes taken out from my right arm pit) that area (axilla) has 14 lymph nodes. I woke up and was told that I had the lumpectomy but that all 14 lymph nodes had to be removed as the chemo worked so well, it was not known, exactly where the cancer was. My surgeon didn't want to take any risks. He also had to make the decision to cut my intercostal brachial nerve due to finding a suspicious growth on top of that nerve. He was definitely sad about cutting a nerve but he was very concerned by the growth. I'm in physical therapy twice a week now, for lymphedema and very bad hypersensitivity. I love my physical therapist. I just found out that due to the nerve being cut and due to having no lymph nodes in that area, I will always have the hypersensitivity. I can say some days it's so bad I cant tolerate many textures from shirts, jackets, etc.
I went home the same day as surgery. I was very sore. I'm still having side effects from the chemo as well as from surgery. I am still having chemo brain, and my body, by the end of the day, is so fatigued and everything feels heavy. Ryan and I continued to stay positive and take care of each other and Penni. About a month after surgery, I started my first of 35 rounds of aggressive radiation. I went Monday through Friday for seven weeks. I just completed my 35th treatment on July 22nd. It was my mom’s birthday. It was definitely more than special because I got to ring the bell on her special day.
Radiation was really tough, despite the lotion I was given in the beginning, to use. By the time I got to my 20th round, I was beyond exhausted and I couldn't wear any sort of bra. My skin was opening up and I couldn't sleep. I was in a lot of pain. My radiation oncologist wanted to prescribe me a burn cream but I'm allergic to sulphur medications. He said any kind of reaction to sulphur, the cream would make my symptoms worse. I just sucked it up until the end. During radiation and to this day, I continue to get the dexamethasone, herceptin and perjeta in my port, every three weeks, until November. In November I should be getting my port out. I'm pretty nervous about this as my experience with it being put in was awful.
I was told in April, two days before my birthday, that my cancer was a stage three and that all the pathology results came back and I am cancer free! Yay! I truly feel like positivity is the key. I also say it every day... my family, friends and people who I have met because of this journey have helped me to not give up and to not loose hope. I stayed and continue to stay focused and determined.
Ryan and I continue to be out of work. Many of his symptoms have improved, but he's still very much struggling with a couple things like his gate, balance, pain and numbness/tingling in his left hand and pain that goes down his leg. Ryan had a post-op MRI and they found a tumor on his spine. He is now seeing a neurologist, thinking this could be multiple sclerosis, who is conversing with an oncologist. Ryan tells me as other areas heal, he can feel what his surgeon is concerned about. The next step is...he is having another MRI in the beginning of August. If the tumor is the same size or larger, he will require a biopsy. we are hoping it's from surgery and the damage prior too instead of possibly cancer. We are worried. We know worrying is not the healthy approach but waiting is hard and for all we've been through, it's hard to not worry, quite honestly.
My FMLA ran out and after 10 years of service at our local hospital and 20 years total service of nursing, I was let go. The feeling to this moment still hurts. I know I was a fantastic employee. Patient care was my top priority. I also loved what I did. After being let go, I had to scramble around, while very sick on chemo, to get us health insurance. I paid for Ryan's. Penni's and my health insurance, dental and life insurance through the hospital. It's sad to say but true, the health insurance is better than what I was paying through the hospital. Ryan and I lost our dental insurance. Penni has it, thankfully, because she’s a kid. It was hell feeling like things were being taken from my family and I when it was totally out of Ryan’s and my hands. I did meet with a chief officer of the hospital, expressing my sadness as well as a proposal to coach other staff members going through cancer like me and I was heard but shut down. It saddens me that a health care organization could actually put in writing that they are letting you go due to a major health issue.
Every day I think to myself is this really happening to Ryan, Penni and i?!?! Are we really going through things that are really traumatic and significant?!? The answer to both of these questions is yes!!!
We are going to be celebrating 21 years as a couple in September and we are only in our 30s. I tell everyone Ryan and I are very grateful that we can be going through this together. He is my right side and I am his left side. Neither of us expected to be hit hard but we are truly doing the best we can and are making the best with all we have. We feel rich in so many ways.
If anyone is interested, I started writing journals two days after being diagnosed. Writing has been very therapeutic for me. I write on caringbridge.org. there are many things that I journaled about, that fills in all these scenarios I speak about. Thank you for reading! I'm looking to inspire and help as many people as I can.