If you haven’t read the previous installments go here
A little over a week after I had returned home my dad received the news that his mom passed away. A few weeks prior to my surgery we had heard that she wasn’t doing well. It was a very difficult and emotional time for my dad. He was torn between spending time with his mother in her last days on this earth or helping me with my kids while I recovered from a major surgery and with a terminal diagnosis. And while I really wanted him to be able to be with his mom, I knew Jeremy and I couldn’t get through this by ourselves. As he talked with his siblings about plans for the funeral and estate planning my oldest sister, Amy, offered to spend a week helping us while my parents traveled to Utah for the funeral.
Amy lives in California so we don’t get to see each other as often as we would like, so I was pretty excited to have her come. She brought her youngest with her who was 5 at the time. The kids were excited to have a cousin to play with for a week. Amy was so helpful while she was here. She resembles and probably exceeds my own cleaning expectations. She gave my house a good clean while she stayed and added some lively entertainment and some much needed laughs. As part of our Family Home Evening one night we had a dance party and she happily got up and danced around with the kids while I sat on the couch and laughed. She went swimming with the kids while I rested and took a personalized bread-making class from Jeremy. And she happily changed many diapers, bathed, and fed the baby when I was unable to.
While my parents were gone I decided to plan and prepare the annual Mother’s Day gift for my mom. Several years prior, all of my siblings had all agreed to create 2 scrapbook pages of our families for my mom. She loves the pictures of the kids and grand-kids but never remembers to take pictures. She often pulls out her scrapbook to look at all the pictures and to see how much everyone has grown through the years. So I called a local photographer friend that agreed to take some family pictures for free during that week. Amy tagged along to help keep the kids in line and to encourage the kids to smile.
I got the pictures a few days later as well as the pictures that Tanya took at the hospital. Amy and I had fun looking through them and choosing the good ones to put in the pages for my mom and to laugh at Jeremy photo bombing my serene baby pictures. They say “laughter is the best medicine.” And it sure helped during this time.
The day that Amy left, we had a post-op appointment with Dr. Wingo to assess how I was healing after surgery. We packed up little Blake and some formula and drove to North Phoenix where her new office was located. At this visit she discussed with us what was discussed at the gynecological oncologist conference where my case was presented. Because the final pathology report was still pending, the doctors basically decided that they couldn’t decide on a definitive treatment plan until the type of cancer was confirmed. This was a little frustrating. It had been about three weeks since the surgery and we still didn’t know what we were dealing with. Once again we discussed the possible treatment options of chemotherapy and hormone therapy. The pathology showed that there were definite estrogen and progesterone markers on the tumors cells which explained why it grew so fast during pregnancy, so hormone therapy was a plausible option. But we still needed to know for sure what type of cancer it was. She suggested that we could get a second opinion from a sarcoma specialist and gave us a name and said that he would most likely just recommend some clinical trials for various chemotherapy drugs. We agreed that it might be nice to get another opinion. She told us to just let her know what treatment we wanted to pursue whether it be chemotherapy, hormone therapy, or even being treated by a naturopath. I didn’t really know that was an option. I asked her if she knew of a naturopath that she would recommend. Dr. Wingo mentioned that she had a patient who was receiving treatment from a naturopath and offered to talk to that patient and have her call me. I loved that idea. Here was another option I could look into. As she then checked the incision to confirm it was healing properly, I showed her the “pokey” thing that I felt beneath the skin under the scar below my bellybutton. I figured that it was most likely the end of a stitch that I could feel, but I thought it would have dissolved by this point. I was concerned that if it stayed for much longer it would work it’s way through the skin and make an opening for a possible infection. She confirmed my suspicions that it indeed was a stitch and said that she rarely sees this–only in very thin patients that don’t have a lot of fat between to cushion the area between the stitches and the skin. She told me not to worry, that it would indeed dissolve in a few weeks. We made another appointment for 2 weeks later.
Later that week Dr. Wingo called with the final pathology report: leiomyosarcoma. Not what we wanted to hear. This is the cancer that does not respond well to hormone therapy or chemotherapy. She didn’t want to rush us but as this is an aggressive form of cancer we needed to start a treatment sooner rather than later. We understood and told her that we needed some time to make a decision and we would let her know what we decided.
Jeremy and I started scouring the internet for any and all information about uterine leiomyosarcoma. We looked for survivor stories. Those who survived were those who caught it early and had surgery to remove it. But it always would come back a few years later usually in the lungs and sometimes the liver. So there would be more surgery to remove the subsequent tumors. The longest living survivor I had found had survived over 20 years since the first diagnosis. She was one of the lucky ones that caught it early before it had spread. But she had been mangled with scars and adhesions and missing lobes of her lungs from having had so many surgeries to remove recurring tumors. This didn’t sound very promising. After one night of intense research and looking at the statistical likelihood of survival of this particular cancer was about 2 years for stage 4, which I was considered to be. And if I did choose to do chemotherapy, it would slow down the growth of the cancer for about 3-6 months before it lost its effectiveness and the cancer would start to grow again.
Feeling very hopeless after all this unpromising research, Jeremy and I finally decided to go to bed. While we were getting ready we began discussing the findings of our individual research with each other. We each came to the conclusion that it looked like I realistically only had about 2 years. It was heart-breaking. We put our arms around each other and Jeremy just started sobbing. It was the first time I saw him break down and show me that he felt defeated and that he was going to lose me. It broke my heart and I started sobbing too. It was hard to see him without hope. He was my rock and when he broke, I broke even more.
Gradually, the tears subsided and we wiped our eyes. But my mind was so uneasy that I knew I wouldn’t be able to sleep. Jeremy and I went downstairs and I knocked on my parents’ bedroom door and asked if my dad would give me a priesthood blessing. He came right out and gave me a blessing of comfort and counsel to have faith. My mom just cried with me and hugged me and told me that she wished she could take this trial upon herself and take it from me. It was hard for her to see me go through this trial and to not be able to rescue me from it. After the blessing my dad told me that he felt like this wasn’t the end. That my faith muscles were needing to be stretched. Up to this point I felt like I had understood faith. But after seeing all the research telling me that I would be dead in 2 years, it was hard to believe differently. And that is how faith works: to believe that the Lord can do more than the world tells you can be done. And to believe that what God wants to happen will happen and that everything will be taken care of. That is a difficult conclusion to come to.
Dr. Wingo’s mention of a naturopath kept creeping back into my mind. I had never heard much about them or how they would or could treat cancer. So when she called me the next day to give me the name of her patient that she referred to at our appointment I was more than happy to have her arrange to call me. I started mentally making up a list of questions I wanted to ask her.
We made an appointment for Dr. Seetharam, the sarcoma specialist. At the appointment we had to wait for about an hour before he could see us. As we waited I looked around at all of the other cancer patients waiting in the halls. The pale, hollow, sunken faces staring back at me. I started to imagine myself as one of these people and I admit that I started to panic a little.
When we finally met Dr. Seetharam we asked what treatment options he would recommend. Just as Dr. Wingo said, he mentioned several new chemotherapy drugs and new clinical trials going on in the Phoenix area as well as southern California. We looked at which ones would be the best option for us. And then Jeremy asked him how long I could expect to survive if I didn’t do chemo. He seemed to skirt the question and say, “it depends on several different factors…” and blah blah blah. Jeremy persisited and continued, “but how long do you think she has if she doesn’t do chemo?” He shrugged his shoulders and said that if I didn’t do chemo I probably wouldn’t live longer than a year.
We left the office with orders for a basic metabolic panel lab draw and a chest, abdominal, and pelvic CT scan. As we waited at the billing cubicle, his words kept running through my mind: “a year.” I tried hard to hold it together. My breathing became more rapid and I stared at the ceiling while Jeremy took care of checking out. When we finally left I couldn’t hold it in any longer. Jeremy pulled me into the bathroom and locked the door. He just held me while I cried. He told me that we aren’t giving up and this isn’t the end. There are other options and we were going to find them. I wanted so hard to believe he was right, but in that moment I couldn’t see it.
For the next installment go here