“You Know Your Body, If You Don’t Get The Answer You Want, Keep Pushing!”Tina Bills
Disclosure: Images Located In This Blog Contain After Surgery, Cancer Treatments, And Partial Nudity.
Guest Writer & Cancer Fighter: Tina Bills
My daughter Zoey was born on the 14th of November 2015 in Norfolk, Virginia. That was the greatest day in my life and she was perfect. Rob and I were so very happy. A few months later I noticed that it was much harder nursing from my left side than it was from my right. It was uncomfortable and I noticed a small lump. I figured it was a blocked milk duct since that was common and it seemed to be what my friends who had children also went through, so I didn’t worry so much. At one of my OB check ups, I mentioned the lump and she said the same thing that its most likely a blocked milk duct. She told me things I could do that should help, feed from that side first, hot compresses, and massaging the area. Time passed and it wasn’t getting any better, in fact it was getting worse, the lump was getting bigger, I was producing less milk from that side and my breast was sore. Another OB visit and it was the same thing, she told me there isn’t much else we can do about it, if it doesn’t unblock itself, it would probably go away when I stop breastfeeding or they could unblock it with a syringe but that was the last line of defense. I wasn’t planning on stopping to breast feed that early. So I continued to suffer through the pain and kept doing what I felt was best for my baby. One day I was out on my daily walk with Zoey and our dog Kaylee and I felt some pain under my armpit and noticed I had a lump there too. At this point my brain ran wild, it’s cancer, they are going to have to amputate my arm, and other crazy thoughts like that. Then I stopped and said to myself, I need to calm down and shouldn’t jump to such exaggerated conclusions. I told Rob about it and we scheduled an appointment with my doctor to have it checked out. When we got there I told him that I had a lump in my breast and a new lump in my armpit. I told him about my OB saying that it was a blocked milk duct and he agreed and said that sometimes that could cause a lump in the armpit also. He said I was too young for breast cancer so I shouldn’t be worried about it, it was only a badly blocked milk duct. He didn’t even feel the lump until I asked him to but he stuck with his diagnosis and I felt relieved that at least it wasn’t cancer. So I continued going on about my life as a new mother dealing with a blocked milk duct trying to breastfeed for as long as possible. That next year I went home to Ireland with Zoey in around August time. At this point the lump in my armpit was very big and very painful, it felt like holding a golf ball in my armpit. I couldn’t sleep on that side. I was taking painkillers that Rob approved for me to take while breastfeeding. (He is a Dive Med Tech for the Navy so he has some medical knowledge). When we came home, we went to the OB again and told her that its really getting bad, that I started to have discoloration, and the skin texture was changing and that it was just really painful. So I pressed for going to get a procedure where they try and drain that breast and try to unblock it with a needle. That needed to be done by a breast surgeon and before that can be done, I needed to get an ultrasound to rule out anything else it could be. When I went in for the ultrasound, it wasn’t comfortable but there didn’t seem to be any problems and they sent in a referral to see the breast surgeon. A few weeks later, I received a letter saying the ultrasound came back normal and it most likely wasn’t cancer and that I was being referred to a breast surgeon. For some reason, this request was denied by my insurance, they wanted me to see a military surgeon but I would have to redo the ultrasound. They didn’t have anything available until late November for the ultrasound and then it would take even longer to go see a surgeon and I was pretty tired of being in pain. It was September at this point, I’ve been dealing with this pain for nearly a year now. We called the insurance and the hospitals and tried to get them to take our previous ultrasound or to move up the appointment as I was in considerable pain. One nurse suggested we go to the emergency room because they will have no choice but to see me. So off we went with baby in tow, to the navy base emergency room. When we were seen, all they wanted to do was give me more pain meds and send me home but we refused this answer. We told them we wouldn’t be leaving until we got to see a surgeon. They told us that even if we saw a surgeon they wouldn’t be able to do anything that day anyway and we said that was fine. I then was sent to a curtained off area. I waited a while there with Rob and Zoey, I was on an IV for fluids and pain as well. Then the on call surgeon came in and introduced himself. He asked to see my breast, which I showed him. He happened to be a surgical oncologist. He asked me a bunch of questions including how I ended up in the ER, so I told him my story. He knew from seeing and speaking with me that I definitely have breast cancer, it was now just to find out what stage I was. So they pulled me in for new ultrasound. This time was a little different, as the tech was checking my breast with the ultrasound, he paused and said “huh” and I’m no doctor but I know “huh” is never a good thing to hear during a medical examination. So after looking some more and being quite, he explained to me that he was seeing something there that looks like fluid and he isn’t sure what it was and that he wanted to get a biopsy of both my breast and my armpit. So I said ok, so they wheeled me into the next room and had me set up for biopsies. I don’t remember if they gave me any numbing agent but this procedure was very painful. Then he told me that the biopsy came back as positive for breast cancer and that I was definitely stage 3 but maybe stage 4. He decided I needed to be admitted and he wanted to get me into a brain MRI, because I often get headaches, and he also wanted a whole body PET scan, to see if the cancer was anywhere else in my body. I got the scans done, it was getting late in the evening. The brain MRI came back clean but the PET came back showing activity in my liver. Since I was already stage 3, possible stage 4, they were going to implant a port at the same time get a liver biopsy. A port for those that don’t know is the small rubber bubble type device that in implanted near your collar bone with a tube that goes directly into the heart. This is for use of chemo medication since chemo can burn through your veins if you were ton use a regular IV. I remember going into this procedure and they placed the port first, which wasn’t that painful at all, it went really well. The liver biopsy on the other hand was extremely painful and I remember that something ended up not working correctly with the machine they were using so they had to roll me into another room half way through the biopsy. As I am going through all these things, Rob was talking to my mum who happened to be in New York at the time and planning to visit us in a couple of weeks. After hearing what was going on she changed her flight to come down that same day. My mum was there when I finished with all my procedures and all I remember was that I was groaning in pain and apologizing to my mum that the house wasn’t ready for her and I was telling her where to find the bedsheets and pillows and everything she would need to get set up. Of course as a mother she told me to stop worrying about silly stuff like that and focus on myself. It was late so Rob drove my mum home to get some sleep, Zoey was with me and I was finally alone since everything had been told to me. I broke down and cried. I didn’t really know what to think, I didn’t know what was going to happen and I was just super overwhelmed, I didn’t want to die right after finally get Zoey into my life. I wasn‘t supposed to miss her growing up, it broke my heart to hear that. A pastor came in even though I specifically asked them not to send one, I am not religious so I had no interest in speaking to anyone about it. Rob came back to the hospital, the doctor came back to see me and said they haven’t gotten anything back yet from the liver biopsy and that I should get some rest. It was late at night at this time. I was tired, my side hurt from the biopsy, the port hurt and it was just a long day. The next day, they still didn’t have any conclusive results. Then the Oncologist came in again and explained that they were over capacity at the navy hospital and they are only taking active duty at this time and they needed to discharge me. So that was kind of crazy, I’m stage 3, possibly 4, could be dying and they want to discharge me from the hospital and say good luck with whatever oncologist you find out in Virginia Beach. As Rob is in the medical field he started working hard, calling in any favor he could, talked to any one available, burnt any bridges necessary to get me the best oncology team in the country.
I told my family about my diagnosis, I told Facebook which told everyone. I got a lot of love come in from every direction. Zoey’s 1st birthday came up and we had a few people over for it. I just wanted it to be a normal 1st birthday for my baby but my cancer hang heavy in the air. I tried as much as I could to be happy and celebrate but others just didn’t know what to say to me. About 3 days later, on November 17th I got the call from my navy oncologist and he told me that yes it has been confirmed stage 4. At the age of 28, I was stage 4, and had triple negative inductal carcinoma breast cancer. Triple negative, I found out, is the more aggressive type of breast cancer as it is not responsive to any of the hormone treatments so there are not as many treatment options available. There is no cure, I was going to die from this. Zoey is 1 year old and she was going to lose me. She wasn’t going to have a mother. Rob would lose his wife. Everything I had planned for us in our life was suddenly gone. But I didn’t get upset, I went into survival mode and talked to Rob about all the things we need to get done.
Rob was lucky enough to come across a person who was a resident at Johns Hopkins in Baltimore and he was able to get us an appointment with a surgical oncologist. We new that there was nothing a surgeon could do for me now but we met with her so that we could get into the system. When we saw her, we explained our story and what had happened and that we just want to get in the system and get seen. She then sent us to an oncologist in Johns Hopkins Sibley Memorial hospital in Washington DC. There we met with a Portuguese lady who would become such a large part of my life and I felt very important to her and she really cared how I was doing and what we could do to make things as easy and comfortable as possible. I loved her very much for all that she did for me. She explained to me early on that I wasn’t a surgical candidate, that I would do chemo more for pain relief than anything else. I was supposed to get my affairs in order and make memories as I was not supposed to survive the year. By the time I started AC chemo, also known as the red devil, it was still before I would have even seen anyone about the breast ultrasound with the navy. Imagine if I had just waited to be seen by the navy, maybe I wouldn’t still be here? I don’t know. But I’m glad we went to the ER and fought to be seen.
I have since had 4 surgeries , multiple procedures, some more biopsies, a plethora of scans, new metastasis to my tibia, brain and abdomen, and a few chemo treatment changes. As you might have gleamed from the dates in my story, I did in fact survive past my 1 year diagnosis; I will be living with this for 5 years coming this November. I have beat all the odds, the bad because I got triple negative breast cancer so young, and good that I passed my 1 year mark. I plan to continue to beat the odds and I hope to make it to the age of 40. I am currently doing an immunotherapy called Kaytruda and I am doing very well on it and my cancer is stable. This means that there are no new tumors growing and the ones that I do have are not growing in size, so those are good things. I am not suffering from any side effects from the treatment and I am doing very well. At the moment I am only suffering from some shoulder pain, which turned about to be avascular necrosis, which means there is not enough blood flowing to my bone and that its is dying. They said that I got it from excessive steroid use with my chemo treatment. I got scanned recently and it shows that there’s an actual piece of bone that has broken off my humeral head. So I will be getting a shoulder replacement early November, and celebrating my 5 year Cancerversary later than month. That’s It!
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Second: Donations can be made directly to Tina Bills to her GoFund Me Page.
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