Sunday, March 23, 2014

Understanding . . . Life.

Our lives are made up of events. Each moment in our history has impacted who we are today, some insignificant and unknowingly and some monumental and memorable. We never truly realize at that instance the impact that those events will have on our future selves.

I have no idea how I ended up in the series of unfortunate events that have plagued me through my 20’s. I stopped wondering “Why” a while ago. I can’t figure it out, it makes no sense; and I realized the chaos in the question was just never meant to be answered. The events of the past two weeks, have left me withered and feeling defeated.

Monday had just started out bad. My Mom became sick and couldn't watch Stephen so I could go to meet with the Radiation Oncologist. She sent my Dad over, which was great, but, it left me to finish getting the girls ready for school by myself instead of being able to rely on her to finish up. I was running late to get there. I hate being late.

I am not sure where the lines of communication get mixed up. Different doctors interpret scans in unique ways. They type reports differently and then there are the doctors that read the reports to their patients who analyze the results in different ways. That leaves the patients with a small portion of the actual results. It’s frustrating. It’s infuriating and there’s not a damned thing you can really do about it unless you are staring at the actual scan. I never asked for a copy of my scans, and never really had a doctor sit down and show me what my scan looks like. That is, until Monday. Monday I sat down with the Radiation Oncologist and he showed me the screen of my pelvic MRI. The arrows pointed all over my pelvis to black dots. One, two, three, four, five, six, seven, eight- I lost count. My pelvis is covered in cancer. I never realized or was told how many lesions are in my pelvis. And just because it’s news to me doesn't necessarily mean it is news to anyone else. It’s like playing telephone and unfortunately I am at the last person to hear so it is a bit garbled up by the time it reaches me. He explained that the lesions in my upper pelvis, left to right, are small, but seem to be causing me the most pain. As you move down my pelvis, they get larger. The ones along the bottom of my pelvis are triple the size of the ones along the top. Apparently, in not-so-technical radiation terms, your body is split into different sections. You can only have one portion of your body radiated at one time. Your pelvis is usually split into two sections. He wasn't sure if he would be able to radiate my pelvis in one round (one round equals 10 sessions, 5 days a week for 2 weeks) or if it had to be done in two. I was to report back the following day to have a special X-ray scan and a CT scan to measure my pelvis and then come up with a treatment plan . . . a palliative treatment plan. Not one meant to cure, just one meant to help improve the quality of my life. 

I wasn't expecting to get a call that my sister and Dad had called an ambulance for my Mom. She was rushed to the hospital for pretty severe symptoms. I am pretty sure I had a mental breakdown later that day, one of many to come over the course of the week. I was on the treadmill walking and I looked out the window, only, I was back in the hospital. I was on the hospital bed, just staring out the window. The doctor was sitting in a chair across from me telling me how they found cancer all over my body. I looked at her, in shock, and just asked “Am I going to die?” My very existence on this planet was immediately threatened and I could no longer see my future, I couldn't see my kids growing up, I couldn't see me growing old with my husband. I saw black, I saw nothingness. I cried, like I have never cried before. I wasn't at the hospital anymore; I was home, back on the treadmill and crying. My life is still threatened. It doesn't move forward, I am stuck here, in Cancerland. I feel like I am stuck in jail. The whole world moves on with their lives. Friends are getting new jobs, new opportunities, finishing school; they are buying houses, having more babies, and I am here. Just doing what I need to do to live yet feeling like I am not getting to truly live my life. I am stuck with the mundane activities of a terminal cancer patient. You know, just doing what I can to improve the quality and time span of my life. I’m only 30. Sheesh.

Then it just spirals out of control. I go back the next day for the scans and lay on this table. For. 45. Minutes.
Me. On this table. For 45 minutes. This table is flat and not cushioned- I cannot lay flat. It shoots pains in my hip down my leg. I swallow hard and breathe heavy but the pain overwhelms me. Just when I think I cannot lay there another second, the test is done. I don’t think the tech realized how disabled I actually was laying there. See, I put on a good front and everyone sees it because everyone tells me. I hear “If you didn't tell me you had cancer, I wouldn't have known.” or “You don’t look sick” and the ever famous “But you look great!” Well, I am not sure how a person with cancer is supposed to look? Skinnier maybe? Not happening. Tired? I wear makeup. Groaning in pain? Not a chance. It’s called sucking it up, and that kids is what I do best. So I try to sit up, and I physically cannot. I make a little noise and the tech comes over to help me. I cannot even sit up myself so here he is actually lifting me, dead-weight, to sit up and I just start screaming and crying. The pain is unbearable. And it only got worse as I went for the other scan. I should have brought someone with me. Augh, stupid, stubborn me. They told me they would call me in 2-3 days with a treatment plan. I’ll officially start radiation next week. Side effects include but are not limited to: skin irritation on the area, vomiting, diarrhea, trouble urinating, fatigue and a couple other fun not-gonna-mention stuff. You’re jealous, aren't you?

The news on my Mom wasn't looking great. Not dead bad, but like need surgery bad. So it’s up to me and my other sister to make sure my Dad has food, and their dog is taken care of, and someone visits Mom and make sure Dad doesn't go ballistic on a nurse. The stress was mounting and absolutely no one, and I mean no one could understand. Not even the closest of friends could grasp how hard life is to juggle when shit literally hits the roof. I've gotten the most slack from people over my lack of ability to returns calls and texts, to get on Facebook every minute of every day, hang out or go out. I know for a fact that each one of my friends at one point or another has gotten annoyed with me over this. So, let’s add in that to this mountain of crap and I was headed straight for a mental ward. I’m not exactly sure what everyone wants from me? I am trying my best here. I am trying to not die while raising three little kids, be a wife, a daughter, a sister, an Aunt and a friend. Contrary to popular belief, it really isn't as simple as it seems.

Remember those events I talked about? A simple comment of an Instagram picture of mine flashed me back to my childhood. I was where I loved to be: the softball field. Nothing else in the world can touch me, can bother, or interrupt me. It’s just me and the game. It smelled of spring, the warm sun on my skin, my adrenaline rushing just waiting for that line drive to come straight to my glove. It’s one of those times, however oddly inconsequential it may appear, is one that molded me to the person I am today. The innocence of that little girl is something I will never have back, but her sheer persistence, ingenuity and dedication is what followed me all through these many years later. And it was in this moment that I realized that no matter what is thrown my way, I got it.

My Mom was released from the hospital this weekend and really needs to start taking better care of herself (MOTHER! I KNOW YOU ARE READING THIS) or she will end up back in the hospital and next time it will probably require surgery. I will figure out the next weeks of my life with the same fortitude I learned playing softball. Radiation won’t be easy but it will help me, and even though I may not be able to buy a house, have more babies and start a new business, I will be able to move around easier and not have pain while checking things off of my Mommy Bucket List. And that is pretty much all I can ask for.  

Friday, March 14, 2014


All I wanted to hear on Thursday was "no more chemo".

I know that my cancer will return full force again; it is just a matter of time. Since I am missing the gene that suppresses one’s tumor growth in the body (Li-Fraumeni Syndrome), I will always been threatened with new cancers or the progression of my breast cancer. I was doing so well, chemo worked great but it was horrible. I felt horrible and I looked horrible but it did its job. Mostly all of my tumors showed vast improvement in regression; which is great but I hated chemo. Did I say that already? Well, I did, I hated chemo. I went 11 straight months, every week- I deserved a break. I guess we just hoped the cancer would stay at bay, at least for a while.

I feel bad for my Oncology PA, I am pretty sure I hit her with close to 45 questions I wanted answers to. She wrote them all down on a piece of paper. We discussed some there, and some needed to be answered by “the man” . . . my oncologist. When he walked in the room, he said to me “Why should you keep living with this pain?” I don’t really have a logical explanation why. I can’t take pain meds; I cannot function as a wife and mother on them. I will not be attached to a pain patch that makes me sick and makes me have to take more meds to counteract the reactions. I most certainly will not sit my ass on a couch and cry and complain every hour of every day. I would rather just deal with the pain because the alternatives outweigh the benefits. “Let’s try some radiation.” he added. Radiation will reduce the size of the lesions and alleviate my pain. This is a palliative treatment. It will not cure my cancer; it is simply being used to relieve symptoms.

Now, radiation for me is a complicated. There are certain guidelines to follow when dealing with LFS; one of which being to avoid radiation therapy if at all possible. Here’s why: there is a small chance that radiation can cause secondary cancer because of the radiation. Well, if a patient with a P53 gene can get a secondary cancer due to the effects of radiation, the percentage is even higher for a person without that gene. If you are still following me, because of my LFS I am at in increased risk of developing another type of cancer normally, but having radiation would double that chance.

Doctor’s don’t normally like to be questioned, but mine takes it in stride. I said, “Uh, what about the LFS?” and he just smiled. The plan is to start me on radiation, very small doses of radiation, for one session. One session could be 10 or so rounds of radiation. I would go every day for a couple weeks. There should not be any higher risk to me with this low amount of developing any new cancer. I will have radiation a lot closer to my house, and meet with the Radiation Oncologist next Tuesday. This doctor ultimately decides exactly how much radiation I will receive- my oncologist simply recommends what he would like to me to have.

This next step is frightening, but it’s better than chemo, it’s better than being in pain and it’s better than being dead. If it’s gonna help then I’ll rock it in good ol’ Kate fashion.

I’m gonna be Radioactive, radioactive.

Monday, March 10, 2014

The Potholes in the Road

Life is full of bumps in the road; mine however, seems to be filled with potholes. As soon as one pothole gets patched, another storm brings new ones.

I have posted numerous times on our Facebook page how I have been suffering from this horrific back/hip pain. It’s more like the back of my hip, my pelvis, which has a stabbing pain in it just about every single second of the day with little to no comfort. I have endured the pain, not taking pain meds because they make me loopy. I simply cannot afford to be out of it while being a full time mommy and wife. I started seeing a great orthopedic doctor who seemed to generally be interested in helping me. First, he wanted to pinpoint my pain with a MRI of my pelvis. That MRI was the absolute worst non-invasive testing I have had done. The test itself was about 45 minutes long, and I had to lay with my arms above my head on a hard table in an itsy-bitsy tube. Halfway through I became desperately sick because my arms had started to hurt tremendously. I am stuck in this tube that I barely fit in and it is in that moment that even though I am not, I feel myself becoming claustrophobic. I just kept singing in my head “This girl is on fire . . .” The song empowers me. Needless to say I was elated to be done with that test and never once gave a thought to the reason my prescription said I was there: “To rule out Metastatic Disease”.

I figured today when I went in to have my results read I would be leaving with an answer besides the one I received. There are new lesions in my iliac crest (pelvis). Sigh. These are not previously noted on any scans, giving the reason to suspect the cancer has progressed. This is the reason for my pain. The lesions are exactly where my pain radiates. There is nothing my orthopedic doctor can really do for me now. He ordered some PT (physical therapy) in hopes to desensitize the area so I am not in constant pain. I have an appointment scheduled with my Oncologist on Thursday to discuss these new findings. I know it’s selfish but I seriously just don’t want to go back on chemo. I just feel like I am starting to feel “myself” again. I started losing weight, I have hair again, and my life doesn't revolve around chemotherapy and doctor’s appointments every week. I am ready for this pothole to be patched up. Do you think I could tweet Pittsburgh’s 311 Service to take care of this? Augh, I didn't think so.

James 1:12 
Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.