Sarah Ross: "Fighting Cancer with Knitting"
Sarah Ross: “Fighting cancer with knitting”
Sarah Ross is a young girl, just 28 years of age. She was born in June 1988 right outside of Buffalo NY. She has an associate’s degree in veterinary technology and worked as a volunteer at the local SPCA (animal shelter/rescue) as a surgery technician. The introduction sounds like the life of a very normal girl but no, Sarah’s life is not normal at all. In her young life, she has had to deal with more health issues than most people can imagine. When she was just 8 years old, she was diagnosed with neuroblastoma and on November 17th, 2015 her life would forever change when she was diagnosed with leukaemia. Still, while facing a long battle with treatment, a very uncertain future plus all the psychological difficulties that come when being diagnosed with cancer, Sarah found the courage to start her own little online shop on Facebook. Here she sells her own creation of blankets.
I had a very open hearted talk with Sarah about her illness, her treatment, her recovery and about fighting on and taking a few risks. With this story, Sarah hopes she can help and inspire other people who are facing or have been affected by cancer.
When did you first sense something was wrong?
Almost a full year before I was diagnosed, I had some blood work performed before a routine surgery and those results were somewhat abnormal, however not very alarming so these results were more or less ignored. About five months after this is when I started showing signs that something wasn't quite right. At first, they were small changes like more acne than normal, I noticed a change in how my hair felt. As things progressed I started feeling more and more tired. I was getting a lot of unexplained bruises, was getting out of breath very easily, and I was getting more infections than normal.
When did you get your diagnosis and how did you respond to it?
Before I got my diagnosis, I had to get a blood and platelet transfusion so that I was able to undergo the test needed for the diagnosis. In order to diagnose leukemia, a test called a bone marrow biopsy is performed. After having this procedure /test and the results were in, I was brought back in for an appointment where I was told that I had Acute Myeloid Leukemia (AML). I got my diagnosis/results through the doctor’s office that ordered the test, however that doctor is not the one that cared for me during my treatments (I was referred to a local cancer institute, Roswell Park). The two words that best describe that day are numb and confused. To this day, that day still seems surreal. I was told I immediately had to get to the cancer centre to start treatment. The trip from that office to the cancer centre is still a blur, and I barely even remember the check in process.
Can you explain a bit about the actual disease?
Leukaemia is a cancer of the bone marrow. Normally the bone marrow is responsible for producing blood cells (such as red blood cells that carry oxygen, white blood cells that fight infections and platelets that are responsible for clotting). When there is leukaemia in the bone marrow it stops producing healthy blood cells and instead produces defective cancerous cells. The lack of healthy cells can lead to problems such as infections because the body now lacks the cells needed to fight off infections.
Try and describe your treatment?
My first step of treatment was to have a central line/catheter placed which was then used for most medications and was also used to draw blood from to prevent multiple sticks with needles. The first few days of treatment included a clinical trial that included a few days of chemotherapy, followed by a week of what is called Induction Therapy. This phase included receiving two strong chemotherapies together over a week long period. Overall I did well during this phase, I did have side effects but the doctors and nurses made sure that they were as controlled as possible (they included nausea/ -vomiting, diarrhoea, being tired in general and of course hair loss). I still remember the feelings I had when my favourite nurse shaved my head for me when it was time. After this phase, I had to stay in the hospital for a few weeks while my immune system recovered and it was safe for me to leave the hospital (due to the risk of infection from having a lack of immune system). In the few weeks after discharge from the hospital, I was closely monitored for any signs/symptoms of infection and side effects from the treatment. During this time I also had bone marrow biopsies to check on the progress of leukaemia and how the treatments were working. The next step was consolidation therapy which was a much higher dose of one of the chemotherapy drugs that I had previously received which is designed to get rid of any lingering cancer/leukaemia cells that were not wiped out with the first round of chemotherapy. This round of chemo was much harder on me and I felt very sick during this process. Because the type of leukaemia I had was considered what is called high risk, the next step was a bone marrow transplant. While I was undergoing the first two stages of chemotherapy the search to find a bone marrow donor was started, and a donor was found quickly. The next stage was testing to find out if my body was healthy enough to undergo a bone marrow transplant. These tests included a bone scan to check my bone density (chemo can make your bones weaker), pulmonary function tests, another bone marrow biopsy, a lot of different blood tests, and an echocardiogram to test how well the heart is functioning. The next step was the prep for the transplant and then the actual transplant itself. The first part of the transplant process was to get "rid of" my "old" immune system, which was achieved by using very strong chemo drugs. The goals of these chemos are to get rid of all of the old damaged cells, so after the transplant, you start with all new donor cells. While this is being done, the donor donates their bone marrow cells which will become my new immune system. After I finished the chemotherapy regimen and my old system was "wiped out", I revived the donor's cells and started the process of making my "brand new" immune system which is the actual transplant. I am still in what is considered the recovery phase and dealing with the setbacks as they come up and am getting used to what is considered the new normal of life after transplant. I am close to celebrating my one-year post transplant/leukaemia free point.
How has everything changed you physically?
The treatments and the actual transplant have had a tremendous impact on me physically, even more so than what I expected going into this process. I did lose my hair, but to me that was the smallest change compared to everything else. Even though I thought that would have a big emotional impact on me, it really didn’t phase me nearly as much as I had thought it would and I actually didn’t mind how I looked without hair (and truthfully I mind more how I look now that my hair is growing back and is in a weird phase of how long it is now than I cared when I didn’t have any hair). One of the biggest physical impacts that I didn’t expect going forward was the chronic pain that I am in due to side effects of the chemotherapies and other treatments. Due to the chemo needed to cure me, I lost a lot of bone density and now have osteoporosis. Because of the loss of bone density I had a compression fracture in my spine. Even though I had a procedure to help relieve the pain and fix some of the damage from the fracture I am experiencing chronic severe back pain. The chemo also caused me to go through early menopause and also the very high probability of the loss of my fertility and will more than likely never be able to have my own children. Even though I was pretty sure I never wanted children. It has been hard to come to terms with that choice being completely taken away from me and not to have the ability to change my mind if I wanted to. Other physical side effects include chemo brain and chronic infections, such as thrush (a mouth infection) multiple times. I have had a couple bouts of minor pneumonia due to my current lack of immune system. I have had a central line in my neck for a large portion of the past year. I also have what is called graft versus host disease (GVHD) in most of my body including on my skin, my mouth, my digestive system, and it is the worst in my liver. GVHD is caused by the new donor cells attacking the existing cells in the body. The liver GVHD is the worst for me and it has affected how my liver functions and causes my liver enzymes to be high. The GVHD in my digestive system can sometimes make it hard to eat and causes stomach/abdominal pain, cramping, vomiting and constipation or diarrhoea.
How has everything changed you mentally?
This I think is the most difficult questing to answer. Cancer and a bone marrow transplant change you so much mentally and it’s almost like there are no words to explain the feelings that it causes. The first one that comes to mind is fear. Fear of the unknown that you are facing, such as will you even survive, what effects will you be left with, and the fear with how will you be able to cope with everything, and even the fear of how life will be after everything is "finished". Another big part of the fear of being a cancer survivor (both leukaemia and being a neuroblastoma survivor as a child), is the fear of cancer returning. There is a constant fear that’s always there about cancer coming back. Any little symptom, such as even a tiny bruise, you worry that the cancer is back. After a while, you learn to live with the fear, but it is always there. Another big emotion that is hard to admit to is depression. In my own experience cancer has made me feel isolated and alone. Even before leukaemia I never had many friends, but cancer made those feelings much worse. More or less I feel like I went through this process alone. I, however, did have the support of many great online/twitter friends that I now consider family that have been a huge support and blessing. But sometimes all you want is a person to sit with you, give you a hug and tell you that everything will be all right. The other biggest emotion through all of this is anxiety. I have dealt with anxiety for most of my life after having neuroblastoma, but it has become a lot worse after being diagnosed with leukaemia. I feel like a lot of the anxiety of not being in control of anything. Cancer has control, not you. Cancer dictates everything from whether or not you will even be able to get out of bed some days, whether you will be in the hospital or not if you are able to feel well enough to do errands or social engagements, and making doctor’s appointments. You never know what you will or will not be able to do (physically and emotionally). This may sound odd but I think cancer has made me a stronger person overall. I have been through all of this and so far I am still standing. When I was diagnosed I did not think I was even strong enough mentally to handle the journey I had in front of me. I was so scared and overwhelmed knowing what I had to do in order to survive, but somehow I mustered up the strength to do so.
How has everything affected your near relatives?
I am not very close to my sisters or my brothers, so this has had very little impact on them. The two relatives that this has impacted are my nephew and my mother. As a little bit of background, I am much closer to my nephew than most people are with their nephews. For a few years, me and my mum had full custody of my nephew, so for a while, I was like a mother figure to him, and he is almost more my son than a nephew. I think in a way my diagnosis has been hard for him to process, but on the other hand, he does understand parts of my illness. I did make the decision to tell him that I did have cancer (for a while I was not sure If I wanted to tell him or not), and I eventually let him visit me in the hospital. I was nervous about letting him come to the hospital because I wanted to protect him from that. I did not want him to know how sick I really was. He does know that I can get sick very easily and that I did have to have chemo, and lost my hair, but overall I still think he is too young to understand the big picture with having cancer and the risk involved. The other person affected the most in my mother. I know this all has been very hard for her. Just like any parent you never expect your child to get cancer, let alone get cancer twice. Even though I was young the first time around, I know it was hard on her emotionally but I was not old enough to realise how much of an impact it had on her. Now as an adult in a similar situation, I am a lot more aware of what an affect this has had on her. I can only imagine how frightening it is to see your own child go through something such as cancer. She has handled everything well.
How do you feel now a year later?
This is also a hard question because how I feel changes from day to day, emotionally and physically. There are some days that I feel fantastic like nothing ever happened and then there are other days where I feel horrible and very sick, and over course there are days I feel in between the two. Lately, I have been having some issues health-wise that has made me feel not as well. I was in the hospital recently because of some of these problems, and I finally feel like they are getting to the point where they are being better controlled. In the next couple of weeks, I will be having my one-year bone marrow biopsy which checks to see if I am cancer free. I am nervous to have this test and to find out the results. For me, this is a big step in my recovery process to make it to one-year cancer free. Personally, I feel like I am cancer free, but it does make me nervous to find out for sure. I think it is more fear of the unknown that you do not know for sure until you get the results and waiting to know is nerve wrecking.
Tell me about your Facebook page, what made you create it and how does it help you?
My Facebook page is a way I use to display the creations I make (knitting), explain how knitting has helped me through this process/making everything easier to deal with, and also as a way to sell what I have already made and take personalised orders. For a long time (even before leukemia), I have had people tell me that I should make some sort of website/Facebook page to sell my items. What finally made me actually create the page is after I had sold at a craft fair organised by a longtime friend. She said there was a lot of interest in my items and she again suggested I make a Facebook page and she would help to get the word out about it. The page has helped me in the fact that I have received more interest and more sales than I normally would have had. It means that I have earned extra money with these sales and orders, which helps to offset some of the extra medical costs that I have had because of leukaemia and bone marrow transplant. I have actually been surprised at how well it has been received. I have gotten more orders than I ever expected. It even came to the point where I had to announce that I could not take any more orders to be done by a certain date. I started taking orders in October 2016 and I am still working on orders now. It has been nice to have the extra money to help with costs and I love being able to make money from something that I enjoy doing and something that I find relaxing and has helped me to cope.
Finally what advice would you pass on to others who are dealing with cancer?
My first tip would be to take everything day by day. Otherwise, it all seems way too overwhelming. At the beginning of my journey, I personally did not think I could handle everything but have found that taking everything step by step makes it that much easier to deal with. My second tip is to treat those treating you (i.e. nurses and hospital staff) with respect. Yes, you are in a terrible situation, but it is nobody’s fault, and being mean to others will not help anything. These people are only there to help you during this horrible time and they deserve respect. I have been blessed to be treated at a cancer centre that has a fantastic staff that has made my cancer journey that much easier. Another tip is that if your hospital has programs such as groups or even crafts or such to take advantage. One thing that the hospital that I go to has is staff that come to your room and will do crafts with you. At first, I choose not to participate in this, but one day I changed my mind and decided to. Not only was it nice to get my mind off things with a project it was also nice to sit and have someone to talk to while doing so. One thing that I made during a craft session was a painted silk scarf. Even though it sounds weird it is nice to have mementoes of your journey. It is nice to have something to help take you away from everything if even for an hour or so. Another tip is to not dwell on the big "why me" question. In my opinion, this does not get you anywhere and does not achieve anything but make you more upset. My goal through everything is to try and keep as positive an attitude as possible and try to take everything as it comes. I would also like to add the role my pets have had on me during this time. I have two rabbits (Quake and Thunder), and to me, I consider them my children. They have brought me peace during this time. When I am having a particularly rough day I will sit on the floor with them and pet them and it really does help. Caring for them and having them help to be an escape from everything and I can't imagine not having them.
You can get in contact with Sarah on her Facebook page:
Blankets by Sarah: Fighting cancer with knitting
Or you can follow her on Twitter:
Interview by Bente Jokumsen (30-01-2017)