But it didn't! In fact, around June or July, I noticed even another lump about an inch high on that same thigh, this one even bigger than the first one! This started to freak me out a little bit, especially because they were starting to hurt a little. I wanted to go into the doctor right then, but our health insurance wasn't so good, and I knew that after we moved out to Kalamazoo, we'd probably qualify for Medicaid. So I waited.
When we finally got out to Kalamazoo and got approved for Medicaid, Jacob and I had to go in for a well check. I decided I would mention it to the doctor, cause you can never be too careful. He said it was probably just a benign cyst and that I shouldn't worry about it. So I tried to forget about them.
It got to be around November, and the health insurance that Medicaid put us on also wanted us to go in and get a well check done. We asked them if we could just use the information we provided them in September, but they insisted that we needed to go in again. I decided I would use this opportunity to get a second opinion on my lumps, because by now, they were really starting to hurt to the point that I often didn't even wanna get up and walk if I could help it. I requested that we see a different doctor for this appointment, but they said that since it was around Thanksgiving, there weren't any other doctors available except the one that I had seen in September. That was discouraging, but I mentioned the lumps to him again anyway, telling him about how much more they were hurting me. He finally said that if it would put my mind at ease, we could get an ultrasound of my thigh to prove that they were just cysts, and that if I still claimed they were hurting me at that point, then we'd have the ammunition to get them removed. So we set an ultrasound appointment with the local hospital.
I got my ultrasound in early December, and they said that it would take a couple of days for results to come in and that they'd call me. Well, we waited for over a week before we finally decided to call them because we were sick of waiting. They didn't tell me anything over the phone and just made me an appointment. When we got there, they basically asked us why we came in again, and we told them it was for the ultrasound results. They said that they hadn't received any ultrasound results from the hospital yet. We were pretty pissed that they made us come all the way down there, and they didn't even have anything to tell us! So we insisted that they call over to the hospital to see if the results were ready, which they did, and they were, and they came back "inconclusive." That's all they told us at that point. We still had no idea of what was really going on. They then decided to order an MRI to get a better idea of what was going on in my thigh.
I got my MRI a couple of days before New Years, and it was a lot scarier than I thought. I knew I was claustrophobic before going in there, but I didn't know I was that claustrophobic until I went into the machine, and I only had to have the bottom half of my body done! But then there was a shadow, and they made me go in the machine face first, which I was freaking out about, so they had to put a washcloth over my eyes to calm me down a little. It opened up again on the other side though, so it wasn't that bad after all. They also injected me with this contrast dye, which made it so that I couldn't breastfeed for about twenty-four hours (hey, thanks for letting me know about that beforehand! NOT!). So Brielle got weaned that day whether she wanted to or not. It was not enjoyable, especially at night time, but it was also fine, cause I wanted to wean her soon anyway since I was tired of nursing. They said the results of the MRI would be in within a couple of days.
On the morning of New Years Eve, we decided to call them about the results because we figured they wouldn't call us, and of course, they did indeed already have the results. The only thing the doctor told us over the phone that day was that there was indeed a mass in my leg and that the differential was a "peripheral nerve sheath tumor or sarcoma (cancer)." That sufficiently freaked us out! We looked both of those up and peripheral nerve sheath tumors can either be benign or really deadly cancer, and sarcoma is a deadly cancer as well. I mean, how many cancers aren't deadly? Am I right? I think I bawled on and off for the next three days. We contacted everyone in our immediate family with the news and begged them to pray for me. We also took out a $250K life insurance policy for me just in case, before anything was officially diagnosed. We were invited to come in and talk to the doctor face to face about the MRI results the next Monday, and they said that the West Michigan Cancer Center would be contacting me very soon to make an appointment for a biopsy. This ended up being a huge hassle in and of itself!
We didn't trust that they would make the referral to the cancer center themselves because they hadn't done anything on their own since the beginning of this adventure. So Friday afternoon on the second of January, we called the cancer center to see if a referral had been made and if an appointment was getting set up. Of course it hadn't. They hadn't seen anything come over about me at all. We called our primary care physician again to see what was going on, and the medical receptionist that we talked to was super rude! When Jacob asked if he could speak with someone on our medical team, she said that the whole team was out for the holiday, and he asked what holiday it was that day, to which she responded, "Sir, I don't have to be patronized this way! Have a nice day!" and then she hung up on him. I was listening in on the conversation, and I swear he was not speaking in a rude tone or anything, he was legitimately asking. Yeah, I still really hope that chick gets fired. Seriously, how can someone whose job is centered around customer service treat someone who just found out that his wife might have cancer so rudely?! Needless to say, we're switching primary care providers.
So when we went in that Monday, the doctor gave us the official radiologist report. He also profusely apologized for having said that it was probably nothing in the first place and commended us on being pushy about getting it checked out further. That was nice to hear. Anyway, the radiologist report said that the lumps in my thigh were actually just one mass that was poorly defined, stellate/spiculated (spiky like a cactus), and 2.2 x 3.5 x 10.6 cm in its greatest dimension. This was a lot to take in! Ten centimeters! That's huge! If it was cancer, I was sure I was a goner! How on earth did it get to be that big in less than a year?! The "stellate/spiculated" part really scared us too, because apparently that often is a good indication of cancer. At this point, we had very little hope that it was anything but cancer. All the signs pointed to it, and with it being such a large tumor, the chances of surviving were slim.
This was when things really started to get real. I was so sure I was gonna die that I even started planning my own funeral and picking out girls that Jake could marry after I was gone. I got a personal blessing and a blessing of the sick over those next couple of weeks, neither of which gave me much comfort. Nothing was jumping out and saying, "It's benign!" or "Don't worry, you're still gonna live!" Nothing. Jake was really positive the whole time, saying, "I'm sure it's benign, Sweetheart," and "You're gonna be fine," all the way until one night. I told him to be totally honest with me about whether he thought it was cancer and whether he thought I was gonna die. He told me that he was pretty sure it was cancer, and that he honestly didn't know if I was gonna die. I remember just holding each other in the kitchen after the kids had gone to bed that night, bawling, with him saying things like, "I can't lose you! The kids need you! I need you!" and me saying, "I don't wanna die. I have so much left to do! Who'll take care of the kids? What will happen to you? You'd have to quit med school...." It was a really sad, but also really sweet time. I got to see how much my husband truly loves me, and how important my role as a mother and wife really is.
The next day I asked for another personal blessing from my husband. He gave me one, and this one was a little more encouraging. It said that "my Father in Heaven had heard my prayers, loves me, and knows the desires of my heart." That wasn't necessarily a slap-you-in-the-face, you're-gonna-live phrase, but it gave me so much comfort! I knew that if it was cancer, and if I was gonna die, that it wasn't because my Heavenly Father didn't love me. It would have been just part of his plan, and he would have provided a way for my husband and children to be taken care of, and they somehow would have been better off because of that tragedy. I knew that things would be alright. I also had a great sense of hope that it really was benign and that I was gonna be just fine. I almost chalked that up to just being in denial, but I honestly think now that it was the spirit telling me that I was gonna be okay.
I went to the West Michigan Cancer Center in Kalamazoo, and they were truly wonderful to me. Everyone was so nice and really acted like they cared about me, but they said that whatever was in my leg was so "unusual" that they were going to have to refer me to the Comprehensive Cancer Center at the University of Michigan Hospital in Ann Arbor. We went over there on the fourteenth of January, having no idea what they were going to tell us or what they were going to do. In fact, the way that the oncologist at the West Michigan Cancer Center talked, it seemed like I wasn't even gonna be able to get just a regular old needle biopsy, but a surgical biopsy instead. They ended up determining that a needle biopsy would be just fine and they did it right there that day. They also got a chest x-ray that day, so that if it was cancer, they could see if it had spread to my lungs (generally the first place to which sarcomas spread). They called us the next morning and told me that the chest scan came back clear. Thank goodness! At least we knew that it hadn't spread! That was wonderful news in and of itself! Then, we got the results of the biopsy the next afternoon via phone.
I got the phone call at around 1:30pm. Jake was at school, so I was just at home with the kids by myself. I was freaking out, cause I didn't want to get bad news by myself! Luckily, it wasn't bad news. The woman on the phone told me that the results came back negative. I asked if that meant that I didn't have cancer, which is what I figured, but I had to make sure, and she confirmed it. I didn't have cancer after all! I couldn't believe it! I just fell to my knees, bawling my eyes out, thanking the Lord out loud over and over again. I truly felt like God had healed me, that he had literally saved my life. They also said on the phone that they would determine exactly what the tumor was the next Wednesday at a "tumor board," and then they'd tell me their plan of action to treat it.
We received a call today telling us that it actually is what's called a desmoid tumor, a really rare (3-4 people in every million people are diagnosed with it), benign-ish tumor that doesn't metastisize, but that can cause problems with the surrounding tissue. If you want to look into it more, here's a link http://orthoinfo.aaos.org/topic.cfm?topic=A00505. We still don't know much about it. We have an appointment next Wednesday with the Medical Oncology group at U of M to figure out what we're going to do with it. Hopefully they decide to remove it because it is still causing me some significant pain, but hey, at least it's not cancer and at least I'm gonna live!
I can't tell you how humbling this experience has been for me and my family. It has taught me a lot of things. A) that as much as I trust doctors, if there's something about your body or health that concerns you, get it checked out as soon as you can, and trust your instincts if you really feel like there's something wrong B) that life is precious and that we all should treasure every last minute we have on this earth, C) how important I actually am to my family and how much they truly love me, D) how WONDERFUL a program Medicaid truly is because I can't imagine having to add the worry of paying for all of this to this experience, E) that even though I don't have a house, a bunch of money, or all kinds of fancy things, I truly am blessed just to be alive!!! F) that my Heavenly Father is directly involved in my life, that he has a plan for me, that he loves me, and that he will always be there to take care of me, which is the greatest blessing of all.
Now I'm going to go spend some time with my precious little family and enjoy every freaking second of it!
