‘cuz i don’t care if they eat me alive
i’ve got better things to do than survive
i’ve got a memory of your warm skin in my hand
and i’ve got a vision of blue sky and dry land – Ani Difranco
I’m a 33 year old woman, Speech-Language Pathologist in a local school district, mom of two crazy kids (Alexander and Amira) wife to a man who does it all (Jeffrey) and I have been dealing with two separate cancers for almost two years. The cancers are unrelated and we do not have evidence of a cause. I do not have confirmed genetic links or family history and science has not unturned an environmental cause. Cancer happens and it happened to me twice in a year and a half. This is a very short summary. Read the blog for all the great details.
It started with a breast cancer diagnosis in 2010. I found a lump, had tests, procedures, tests, doctors, surgery, more tests, different doctors and then my breasts were removed. I had reconstruction surgeries that year. All my cancer was gone. A month after my last reconstruction surgery I found another lump. This one was in my neck. Three different doctors told me it was okay. That it was not breast cancer that spread. My friends thought I was paranoid and there is no way I could get cancer again. Radiation said it was a lymph node but wasn’t cancer. Then I got another lump. And my body had unexplained bruises all over and I was tired. Wounds weren’t healing. I had a sore throat for a month that turned out to be an infection but I told myself I had mono. My breast cancer doctor, Dr. Lilly, the one I trust the most and who had told me it wasn’t breast cancer ran a Complete Blood Count test (CBC) and it came back with a crazy high white blood cell count. He called me at home on a Saturday morning (he always calls after hours as soon as he gets results) and told me it was some kind of leukemia. I didn’t know what all that meant. Had I known what it meant I might have chosen to just go to bed and let it consume me. But, I’m generally positive and I said okay. I was still telling myself it was just mono. I went to a cancer center and got a misdiagnosis and he sent me home. He basically said that with treatment I had ten years to live and there was no cure. The other leukemia was really bad and would kill me within months without treatment but there WAS a cure possible. I was really sick at this point and was in bed barely functioning. He called me two days later and his voice sounded urgent and apologetic. He told me that I have Acute Lymphoblastic Leukemia (ALL – the bad leukemia) and that I needed to go to OSU Medical Center immediately. They were expecting us at the Emergency Room. I saw many doctors. There were several phone calls made between doctors. ER doctors quickly passed me off to a team of doctors who came down from the James Cancer Center Hemotology Clinic. I still didn’t understand. I listened emotionless and nodded to their their statements and questions. I knew it was cancer but I had done cancer before so I still thought I was fine. It was when they told me that I needed a central line that I panicked. Not even port line was good enough. This was serious. This cancer could kill me and soon. I was checked into the 10th floor James to begin chemotherapy right away. There was no discussion or other options. The doctors told me that it would be a long journey with lots of road blocks but they would get me through it. Doctors are big on cliches. I was on the 10th floor for over 5 weeks. I was told I could not work for at least a year and I would need either 2.5 years of chemotherapy or a Bone Marrow Transplant to potentially cure me.
Considering the risks of the BMT we started the chemo. The chemo caused heart damage that may or may not be permanent. Another chemo caused pancreatitis and I ended up in ICU with septic shock and machines breathing for me. To keep my blood pressure up they gave me fluids until I had put on 50 lbs of water weight. I could barely talk and couldn’t move my own body but a friend came and told me to do whatever the doctors tell me to do to get better. Jeffrey faithfully visited me during their strict visiting hours of 5:00 am, 10:00 am, 5:00 pm and 10:00 pm. He did this while taking care of kids, getting them to school and going to work himself. Eventually, I ate and I drank and I walked and I got better. I came back from that and was doing so well that my doctor said we would go ahead with a transplant. They found a donor in Germany. A 28 year old male was a perfect match and donated enough bone marrow for three transplants. It was infused into my body via IV at 2:00 am on January 15th. I have spent a total of over 13 weeks as an inpatient in the hospital. Almost all of that time was spent without being able to see my children and usually too sick to even Skype. I was visited often and frequently by friends and family and their support is not only appreciated but is necessary to my survival. There has not been evidence of leukemia cells in my body since two weeks after starting the first chemo and we are believing that this transplant will prevent remission. It’s all recovery from here.
There are lots of words that become a regular part of your vocabulary once you are diagnosed with cancer. One of them is survivor. It’s like that is supposed to be my mission in life right now. Just survival. But to me it’s more than that. I need to live. Some have said that I am strong but that doesn’t feel accurate. I’m just putting one foot in front of the other and moving forward as best I can. ‘Cause what’s the alternative?
This blog is about what occurred after I started doing self breast exams following my mother’s death from ovarian cancer.
Early July 2011 I found a lump in my breast. Or I should say I found it again. I found it the first time a few months before when I was in the middle of finishing grad school and going back and forth to Texas to be with my mom. Honestly, I forgot about it until I felt it again. I had a gynecologist appointment scheduled for the end of August but called and got an appointment sooner to have it checked out.The nurse practitioner felt it and said it didn’t feel “ominous” and it moved a little so that was a good sign. She said that standard procedure is to send for a ultrasound (u/s) if a lump has been present for more than a month. I didn’t expect this but during the examination she felt some abnormalities in my pelvic area as well. She scheduled a pelvic u/s for me for the next day.I figured the pelvic ultrasound was to check for fibroids. It actually found a complex ovarian cyst on the right side. The doc said it’s either a endometrioma or a dermoid. Either one of those are usually benign but need to come out.Meanwhile, I went for my breast ultrasound. The radiologist wanted to do a mammogram first. That was lots of fun. I’ve never done one of those before. Next up was the breast ultrasound. That was quick and painless. The tech even had heated ultrasound gel. What a treat! The radiologist showed me the pictures and explained that NOTHING showed on the mammogram. Everything looked normal there. He then showed me the ultrasound. He said that there was an area of abnormality where I felt the lump. He said he didn’t know what it was but that it didn’t feel “ominous” (again with that word?). He suggested it might be scar tissue (but from what?). Since the area of abnormality was unidentifiable he said I needed to go for a biopsy. I said, okay, great, lets just do this. I seriously thought it would be nothing.
So, I go to the breast surgeon to whom my gynecologist refers. She does an exam and immediately says that it doesn’t feel good and that it’s likely cancer. She does the biopsy immediately. I got to see the needle going into my breast on the u/s machine. That would have been cool if she hadn’t just told me that I have cancer. She also told me at this appointment that the connection between what I have going on downstairs and upstairs would be that I have ovarian cancer. I’m really not sure why she thought it was okay to say this to me after I just got done telling her that my mother died of ovarian cancer the month before.
Right after that I had an appointment with gynecologist to go over the pelvic u/s results. I called Jeffrey and he joined me for this appointment. My gyno came in and had pictures from the u/s. He’s prepared to break the news to us that I’m going to have surgery. At this point I’m assuming I’m going to have surgery but I just want to know if I have ovarian cancer as well. This poor doctor was trying to figure out why I was crying in his office. He said he “really, really, really, really, really doesn’t think it’s ovarian cancer” and he explained to me why. Once I told him the news from the breast surgeon he said he would be willing to go more aggressive on the ovary surgery and do more than just a cystectomy even if it’s just to give me piece of mind but that the news doesn’t change his opinion on the ovary situation.
After a tense weekend at home Jeffrey and I go to the breast surgeon on Tuesday afternoon for the biopsy results. She said it’s not good news. She said it’s cancer. BUT, she says it’s the good cancer. If someone is going to get cancer then this is the kind to get. It’s grade 1 ER positive/ PR positive and HER2 negative. Go to breastcancer.org for definitions but it essentially means that it’s slow growing and growth responds to estrogen and progesterone hormones. They are able to treat this with hormone blocking pills that I will take for 5 years.
This doctor gives me lots of information (that I’m really not able to comprehend at the moment) and also tests me for the BRCA gene since my mother had ovarian cancer. We are still waiting for this result.
We decide to go to a second opinion with another breast surgeon. We got Dr. Lilly’s name from a friend who has excellent results. At Riverside so far they have been able to move very quickly. We will be continuing with this hospital because of the “second opinion” clinic that they offer. We are also able to get more appointments done at the same place which offers us some convenience. What completely sold me on this surgeon is that he uses purple cotton gowns in this office opposed to the plastic lined paper gowns that other doctors use and I also witnessed him hand deliver my prescription for a Valium for the MRI to the pharmacy.
So essentially I love Dr. Lilly because he gives me drugs and purple gowns, two of my favorite things. And also, my favorite flower is a Lily.