Erika's Hodgkins Lymphoma Journey
I have come here to ask for some assistance from those that are in a place to do so. At first, I was not so comfortable with asking anyone for assistance, but as the medical bills continue to pile up and people continue to request that I set up a gofundme, I am here... and this would obviously be the best way for those who wanted to financially contribute to my journey against Stage 4 Hodgkin's Lymphoma to do so. I have only set the goal that high because that is the actual status of my debts related to this, I do not expect to actually raise all of that.
Here is my story.....
Around December 16th, 2016 I initially posted on Facebook inquiring of others for advice about the after effects of quitting smoking cigarettes. I had smoked cigarettes on and off since the age of 19 or so, and decided to officially quit in August 2016. I was experiencing shortness of breath walking up stairs and was coughing up black specks in my spit, and coughing constantly. A few people who quit said they experienced something similar, that my lungs were probably healing but if it was persistent I should probably see a doctor to be safe.
One day around this time, I set out to go for a run with a friend. I had been feeling a bit more under the weather and still short of breath in general. I was having issues getting through my shifts at work without having to stop to try and catch my breath or hide in the restroom to gain my bearings to get through a shift. This particular afternoon I was feeling better so I decided to try and get some exercise. We jogged across the street and through a parking lot towards a trail, my friend was a bit ahead of me. I found myself having a very hard time getting air and eventually had to call it quits as I was starting to feel incredibly faint and felt my limbs wanting to give out on me and pretty much collapsed before our run even began.
The following day I notice an increase in volume when coughing up the black specks in my spit and this is when I began to feel very concerned. At the time I was not covered with any health insurance so I headed to an urgent care to get checked out. At the urgent care I was told I likely just had bronchitis and was given a prescription for 10 days of antibiotics. I went home for the holidays and took the antibiotics as instructed. I returned to my then home in Las Vegas and was feeling the same, if not worse, and was now noticing a swelling on my chest just above my breast. I became extremely alarmed and returned to the Urgent Care as I was intructed to if I had continued symptoms.
At the Urgent Care I recieved an X-ray of my chest to determine if I possibly had pneumonia or potentially a more serious issue. About 30 minutes later the X-ray technician returned and informed me that there was a mass in my chest that could potentially be cancerous and that I should return for a CT scan as soon as possible. The next available appointment was over a week later, on January 15, 2017.
I waited anxiously for the appointment, and I had never been in a machine like that so the experience was pretty frightening at the time. I was told they would call me sometime in the next few days with whatever results came in. That evening around 7pm, a doctor called me and informed me that I needed to go back to urgent care and get some necessary paperwork and immediately head to an Emergency Room at a legitimate hospital because they could no longer do anything for me. I made my way towards the urgent care and arrived at 7:40 - 20 minutes before their posted closing time. The clerk told me they were closed already and to come back in the morning, even though I informed her how urgent the doctor told me my situation is. She did not care, it was Friday night.
Upset and incredibly concerned I went home and attempted to sleep so that I could come back as early as possible so I could get myself to the Emergency Room. Once there, early Saturday morning, the nurses took an X-ray and did some blood work and within the hour I was told that I was going to be hospitalized as I await further testing. I was absolutely terrified, as I had few friends out in Vegas and was hundreds of miles from any family. My parents immediately booked a flight and headed towards me. Within a few hours I was told that I would be awaiting a needle biopsy that couldn't get scheduled until early Monday morning, so I would be stuck in the hospital until then so they could monitor my health status in the meantime. I had began a vegan diet in December and instructed the nurses. Every single meal I received at St. Rose Dominican hospital that weekend had at least one item I could not eat, if not the 80% of each meal unsuitable for a vegan to consume. I had my blood drawn every few hours, and given medication after medication for various things. Prior to the biopsy, that Sunday in the hospital an oncologist came to speak to my parents and I. She informed me based off of the CT scan and X-ray images she strongly believed it was a type of lymphoma and to be prepared for that diagnosis. She said it was very time sensitive, because the mass was so large, and that I could potentially be dead in 6 months. She informed us it was absolutely vital that I be diagnosed and start treatment within a months time to ensure my survival. I was terrified. I was told during the needle biopsy Monday morning, that I would have results and hopefully a diagnosis within a day or two. This hospitalization and all bills incurred have now totalled up to about $95,000 because I had no insurance coverage.
I was released from the hospital to go home a few hours after the biopsy on Monday. My parents had to fly home that evening to return to work. We decided it was best that I move home February 1st, to get California health insurance and start my journey there - whatever the diagnosis may be, at home with family. For the next 2 weeks I would be fending for myself though, and would need to pack all my stuff and get ready for the move regardless of my condition. I waited anxiously for a few days and heard nothing from the hospital. I called to inquire and was then told I needed to be assigned a primary care doctor off site so that they could discuss the results with me. I wasn't able to get an appointment with that doctor until January 30.. needless to say, I was very upset.
I got through the two arduous weeks of packing and getting things in order and on January 30, a day before my big move, I saw my "primary care" doctor. I waited in the waiting room for an hour, and then waited in the room for him for over an hour. My anxiety was eating me alive. When he finally came in to see me, we had a visit that lasted less than 5 minutes. He informed me that the biopsy samples had been sent to UCLA for further testing because they still had not determined anything from the testing they had done. This was TWO WEEKS after my biopsy, and they had nothing for me! He then prescribed me a high-dose cough medicine and more antibiotics and went on his way. I was furious, terrified, and saddened. I did not fill those prescriptions.
My Kaiser health insurance kicked in February 1st, I made an appointment with my new primary care physician that day and explained to her all that I had been through leading up to our meeting. She immediately referred me to an oncologist in Oakland and got the process started.
After meeting with the oncologist in Oakland on February 6th, I was scheduled for my Video-Assisted Thorascopic Biopsy Surgery for February 8th. I was told my lung was also filled with fluid and that would need to drained. At this time I was told my diagnosis would likely to be one of four types of cancer, and had the differences in them explained to me and which ones would be the best to have out of the four. Thankfullly, Hodgkin's Lymphoma was my best bet. During this surgery they also drained 2 liters of fluid from my lungs. I now had 6 weeks of recovery from surgery ahead of me. I was told I would know my diagnosis in about a week.
On February 15, my oncologist called me and informed that I in fact had Hodgkin's Lymphoma and would need to start chemotherapy as soon as possible but still had to get a few tests done prior in order for that to happen. The following couple weeks I received a Pulmonary Function Test, the necessary blood work and tests to make sure my body could handle chemotherapy, and a PET scan. The PET would determine the staging of the cancer and exactly how much it had spread in my body. The mass was located mainly in my chest cavity, but had spread and attached to the bones of my ribs in the front and back. My new oncologist in San Leandro informed me I was diagnosed with Stage 4 Hodgkin's Lymphoma and told me I would be undergoing 6 months of ABVD chemotherapy. It would be scheduled to start at the beginning of March. Each month, one session would be broken up into two visits. 12 visits total over the next 6 months, 6 rounds of chemotherapy total.
On March 1, 2017 I had a port installed in my chest, and on March 2, 2017 (almost 2 months after I was told I needed to start chemotherapy within a month) I finally began the first half of the first round of chemotherapy.
Since they drained my lungs of the fluids, have healed from the surgery, and since have started my chemotherapy journey - I have been feeling quite a bit better when it comes to my breathing and overall mobility. I have high hopes the chemotherapy is doing what it is intended to do! Side effects have been on and off for me, some days are better than others, but it has been hard. My white blood counts were lower than normal for this point of chemotherapy according to the nurses and my blood pressure has also been alarmingly low, so I have to take special precautions and also keep note of my body temperature.
Not until after completing the first round (1 month) of chemotherapy did I start to experience noticeable hair loss. It came out multiple strands at a time during a shower - it was heartbreaking. I got used to the shedding and just yesterday, April 10, I took the jump and cut my long hair off and got myself a pixie cut. I am hoping I can hold onto this pixie cut for awhile, or maybe not have to go completely bald at all during this journey.
I have been doing all that I can to stay healthy and help my body to fight this thing. I have continued my vegan diet, and have been doing a lot to keep my mental state intact and positive. I have also recently been getting outdoors with the help of friends, and spending lots of time with my incredibly supportive friends and family. The outpoor of love and support has been astonishing and so very heartwarming.
As of right now, my medical bills from just the hospitalization in Las Vegas at St. Rose come out to a total of just around $95,000. I am still incurring bills for treatment at Kaiser, as well as expenses on medication, co-pays, etc. My bills will be well over $100,000 by the end of this journey. The bill collectors have already started calling for some of it and I am not sure what I will do about this, as that's a lot of money to raise with a GoFundMe. So in realistically that's not really what this is whole thing is for...
The main reason I am starting this GoFundMe is more to as a relief for my parents who are lovingly supporting me through this whole thing and to cover costs that I incur just living day to day during my journey. I have been instructed by my Oncologist not to work during this experience and to focus on my healing process. I have applied for disability but I am still in the process of obtaining that. I have not been able to work since the very beginning of January and my disability will only cover after the biopsy surgery on February 8 if it is approved. So ,as a result of all this, my parents have been covering my bills, living expenses, medical expenses, and any fun my amazing friends did not cover for me that I have had in the previous few weeks of the end of March and early April. I still have until August to get by under their care without a job and would like to help them out in some way as they are already doing quite a bit for me. I myself have officially run out of all of my own money as of two weeks ago, including savings bonds that were supposed to go to schooling or some other worthy investment.
My family and friends have been incredibly supportive through this whole process so I do not necessarily need many other forms of assistance anymore. It has become a financial issue more than anything now, and I am trying my hardest to focus on other things and not stress too hard about my financial situation through this process.
As I stated before, I only ask of you for any contributions if you are truly in a position to do so. Any little bit would help, but I fully understand that I am not the only person going through financial burden or health problems so please do not feel pressured. I will never be able to express the gratitude I have for anyone willing to help, but I will try my hardest. <3
I will post updates here on my chemotherapy as long as people are interested. Once my second round of chemotherapy is complete we will do another PET scan to determine how effective the treatment has been thus far, so I will update you all when I have a better idea.
You can also follow my journey on Instagram. Find me at @generalxorgana or click here.
Thank you all! <3
Hello...You have been through so much. Please don't feel that you are asking too much. Everyone needs help when an unexpected situation happens. I was very touched by your story & your modesty in explaining your story. You are doing all that you can and reaching out to others to help you. Best wishes, Pat
Has your doctor(s) mentioned medicinal mushroom extracts or supplements? They (reishi, maitake, cordyceps, turkey tail, chaga) have been shown to help boost the immune system, inhibit tumor/cancer growth, and reduce chemotherapy side effects. It may be worth mentioning something to them. Sending positive vibes your way!
I want to thank all of you who have donated to my daughter's GoFundMe. You have no idea how much this means to me and to my family. I wish I could give each of you a big hug and kiss. And to all who have sent prayers and healing thoughts-thank you as well. You have made this journey more bearable. ♥️