Being Alive vs. Living

I originally posted this on CureDiva April 20, 2014

There is a difference between being alive and actually living. It was a difference that took a Stage IV diagnosis of breast cancer for me to understand.

I was busy with the mundane activities of life. I was a 28 year old stay at home mother to a set of 4 year old twins in preschool and a 2 year old with special needs. My special needs miracle was my son, SJ, who was born nearly 8 weeks premature and suffered from complications of his prematurity since birth. We went twice a day, every day during the week to some sort of therapy session or medical appointment of his. It was tiring work taking care of him. When I came home I still had to be a mother to two other young ones and also be a wife. I ran a nonprofit organization that I co-founded and spent many of my nights up until 3 or 4am trying to get work accomplished. I said “No” a lot to the kids; I was always too busy doing some sort of project to play. Dragging my son out of our minivan kicking and screaming because he didn’t want to keep going to therapy sessions took its toll on me mentally and physically. My back seemed to spasm every week which left me in excoriating pain. Sure we did fun stuff, but not often. I always had a full schedule. I didn't think life could get much more complicated.

That was until I felt the mass in my breast. I got the devastating news that I had breast cancer just days before I turned 29. Preliminary reports came back as HER2 positive, grade 3, IDC and DCIS; but my staging would change after my initial scans later that week. I’ll never forget when the doctor came in the room and told me that the cancer was found all throughout my body and that I was facing a Stage IV terminal diagnosis. I just sobbed hysterically and asked if I was going to die. The best answer she could offer was “We are going to try and not let that happen”.

I had mets to my liver, both breasts, lymph nodes, shoulder, ribs, thoracic and lumbar spine and down through my pelvis. It did not guarantee me a great prognosis. It is estimated that a mere 16% of young women with Metastatic Breast Cancer live past 5 years from their original diagnosis date. I was given a less than 5% chance of ever being cured. My immediate thoughts were of my children. What if I die? What if I leave them? What if they miss me? What if they don’t miss me? I won’t see them graduate, get married or have kids. My mind contemplated all of the things I have never done and all the things I will never do with my children. It was in that moment that I decided something. I would not let cancer be my death sentence. Rather it would be a living sentence; an opportunity to live my life to the fullest despite my own mortality shoved in my face. Living life is an occasion many take advantage of, including myself. I vowed I would never do that again.

No matter how much I tried to plan, schedule and manage my life prior to my diagnosis; cancer and everything associated with it was unexpected and I had to learn how to roll with it. In return, I created a list of things I would try harder to do or not to do in order to fully love living my life with or without cancer.

I say “yes” more often.
I complain a whole heck of a lot less.
I pay it forward every chance I get.
I am spontaneous.
I let go.
I ain’t got time to be glued to devices or screens. (No fancy phone and no personal FB account for me anymore!)
The world can wait on me because my family is my world.
Every Friday is Game and Movie night.
I slowed down. I barely ever say “Hurry up” or “We’re gonna be late” any more.
I smile and I smile often.
Laughter is one the best medicines and I surround myself with all things funny.
I appreciate the little things and smell the flowers more.
I inundate myself with only positive people. I don’t have time to be negative.
I compliment strangers.
I dance and sing like no one’s watching.
I soak up the sun.
I am better at being patient.
I am hopeful.
I am faithful.

And most importantly I love. I love so much now that it hurts.

I can’t say that I am thankful for cancer, because I am not. I can say that my cancer has blessed me. It has opened my eyes and made me live my life the way we were intended to live life. Without cancer, I don’t think I would have ever realized what a big difference there was between being alive and really living my life.

Appointments, Tests and Scans- Oh My!

It’s been a pretty tough week over here. After Easter, I basically had an appointment or scan every single day of the week.

The week kicked off with my Neuropthamology appointment to assess my optic nerve swelling (papilledema). Chemo and the tumors in my spine have caused a buildup of spinal fluid which caused intracranial pressure and swelled my optic nerve double what it should have been. I suffered from severe migraines, loss of vision and floaters. After a couple tests were done I was happy to hear that my swelling has significantly decreased. While the optic nerve is still swollen, it has not been causing loss of vision and the migraines and floaters have almost reduced in frequency. 

Kate: 1 Cancer: 0

Next, were my scans and ultrasound. It was a pretty hectic day. Apparently someone did not schedule my tests accordingly and I ran 1-2 hours behind for every test I had.  We walked to the darkest depths of the fourth corner of the hospital. Seriously, it’s like in Timbuktu of the hospital. First was my CT scan and, not to toot my own horn, but I am pretty sure I set an all time barium drinking time of 12 minutes. My schedule was put even further behind when 2 patients needed STAT CT scans so I sat and waited for nearly 2 hours. My test went off without a hitch. I swear the dye gets hotter every time I get it. I just sing real loud in my head “THIS GIRL IS ON FIREEE!” I headed up for my MUGA scan in Diagnostic Imaging after I finished up at CT. Since I was running so far behind, they were able to squeeze in my injections but not my scan so I had to go to the top floor of the hospital in the Cardiac Unit for my scan. Easy peasy test, but, since they are not able to de-access my port back down DI I went. Needless to say, I was getting quite the workout. I walked back down for my pelvis ultrasound and just waited a little bit to go back. It is incredibly weird looking at an ultrasound screen and not seeing a little baby moving around in there.  Good thing to hear was that the cyst on my left ovary diminished and only a super small one was found on my right. And it’s just that: a cyst, no cancer. 

Kate 2 Cancer 0

I checked in with my Radiologist the next day. I am happy to reports that the side effects from radiation are finally wearing off! I have my appetite back and even feel more energized. The doc isn’t concerned considering how well I am doing now. I finished up all of my medication and have not had any further ‘incidents’. My pain has notably subsided. I can walk, I can sit, stand, lay- I feel almost 100% again! I have little bursts of a shooting pain, but it’s no longer a constant. I don’t have to check back with him for another 6 months. 

Kate 3 Cancer 0

Last I met with my Endroconologist who keeps a close eye on my thyroid. My blood levels were good and my ultrasound was perfect! No growths, no cancer! 

Kate 4 Cancer 0
Looks like I am kicking ass in this fight right now!

Now, I won’t know the results of my other scans until I meet with my oncologist this Friday. I will also have my Herceptin infusion and a shot of Xgeva for my bone mets. But . . .  I got a feeling . . . it’s all good in the hood! 

Grace through me for a loop when she became sick over this past weekend and ended up having strep throat again and an ear infection. Poor girl is so very sick so I will be taking care of her for a couple days. I am hoping I can get started back to my workouts. I am so close to my 20lb weight loss! Half way there!

Hopefully, I will be blogging over the weekend about how well my appointment went and that we will be planning surgery soon! 

A Rainbow After the Storm- Literally.

Warning: This post contains graphic material

The last time I left you I was just starting radiation and my mom was just released from the hospital. I am happy to report my Mom has been doing great at home and has started to make a valiant effort in taking better care of herself. In the midst of all of these things just pouring over me; the pain, my mom being hospitalized, and the crazy amount of stress a rainbow appeared . . . literally. It was snowing, and it was freezing outside and out of nowhere this rainbow showed up. I snapped the picture above of the rainbow over our house. It was as if God was sending me a direct message: "I promise it will be okay" He whispered to me. He said it would be okay, he didn't say it would be easy.

Within a couple days of radiation I felt the fatigue hit me pretty hard. At first I wasn't sure if it was fatigue from radiation or from life in general. The girls became very sick and had spiked fevers and kept me up all night vomiting. I had noticed I also became very nauseated and was barely eating. I thought maybe I had caught a little bug from them. Every day we were trying to find someone to watch SJ and one of the girls so I could head over for my radiation treatments and every day my stomach issues seemed to become worse. I kept reminding myself "You only have 10 fractions; you can get this done, easy-peasy lemon squeezey." I felt the start of a sinus infection coming on, but I trekked through. Last Monday I had to take Lily to the doctor, her fever had gotten above 103 and she had eaten in days. I couldn't make it to radiation, I hadn't slept and I was feeling worse and worse. Well, I was not prepared in any way for what would come next. The following morning, my stomach had started to cramp very bad. I went to the bathroom and didn't leave for a solid hour. My stomach just tried getting whatever was in me out, whether I had to go or not. My whole body seemed to wretch from my mouth and my bum. I couldn't stop going to the bathroom. It wasn't right. The cramps were horrendous. They were worse than childbirth. I screamed in pain. It was unlike any pain I had ever felt. It just wasn't right. And when I wiped- there was blood. Steve rushed me over to the Radiation Center where I seen the doctor right away. Based on my symptoms and a rectal exam, I was starting in to bowel damage. Unfortunately, radiation kills cancer cells but it also damages normal tissue cells. Since I was having my pelvis radiated, my colon, rectum and bladder were all susceptible to radiation damage. The doctor put me on a low-residue (low fiber) diet and gave me two extra days off from radiation. I followed it for a couple days and was feeling better. It seemed to pass as quickly as it came. By that Friday it started all over again and if it was possible; hurt worse than last time. There was more blood and mucus. I assumed the episode was just me not listening to the doctor and eating McD's one day that I felt better. "That's what you get" I thought to myself. Since it was so late in the evening I figured I would just tell the doctor on Monday and would be okay through the weekend. My nausea got worse over the weekend and I was eating once a day. My stomach was so upset I physically could not eat. I only had one more fraction of radiation. I could do this. 

When I went in for my last radiation fraction Iz Kamakawiwo'Ole version of "Somewhere Over the Rainbow" played while I laid there for treatment. It is one of my favorite songs of all time. Here it was again, the rainbow, and a whisper: "It's not going to be easy, but it will be worth it and it will be okay". When my treatment was done I sat up by myself, unassisted. I got done from the table by myself. The radiation seemed to have done its job and my pain from the tumors in the pelvis had significantly decreased. I no longer had a constant pain and could lay flat on a table with minimal pain. This, of course, did not come without cost. 

The next day, the cramping started again. I sat in the bathroom for over an hour this time screaming and crying in pain. My whole body shook. I hadn’t eaten, I couldn’t stop going to the bathroom and the pain was so severe I just knew there was more damage than what anybody thought. It was worse than childbirth; and when a woman says that that’s some crazy-ass pain. Even though my body had nothing left to get out, I still dry heaved and my belly still had spasms as if it did. My doctor sent me straight to the ER. There was enough blood and mucus to be concerned but not enough that I needed a blood transfusion or needed to stay. It was quite apparent that I had bowel damage, which if not treated could lead to more serious complications. I was given a slew of medication to help stop the cramping, ease my pain and heal my colon and rectum.

If you wanna test your relationship with someone, ask a friend to help you administer medicine rectally and see what they say. Hehe! Although I had one friend volunteer and my mom never hesitated to say she’d help me. But it’s cool, no mom, friend or husband of mine is shoving anything up my butt. I don’t care if I have to try for an hour, I will be administering this medication by myself. 

I had another mini-meltdown. It is utterly amazing to me what I have to put my body through in order to either kill or shrink this stupid cancer. In order to live longer and have a better quality of life I have to subject myself to fatigue, diarrhea, rectal bleeding, nose bleeds, mouth sores, nausea, vomiting, hair loss, psoriasis, weight gain, broken nails, numb toes, optic nerve swelling, loss of vision- that’s just insane. Pity parties for me come and go but this one is officially over. I am done with radiation. 

The real test comes next week. I have all of my scans to check on my tumors. IF everything is stable, we may start to discuss planning my bi-lateral mastectomy. I just keep remembering the rainbow. This will all be worth it. 

I hear babies cry and I watch them grow,
They'll learn much more than we'll know
And I think to myself
What a wonderful world world

Someday I'll wish upon a star,
Wake up where the clouds are far behind me
Where trouble melts like lemon drops
High above the chimney top
That's where you'll find me

Mon Valley Relay for Life

I was really excited when a friend asked me if her son and his friends could form a American Cancer Society Relay For Life team in my honor! Since the past month has been so hectic, I haven't had a chance to post about it yet and it's in 2 weeks! Hard to believe it's almost May!

Every day, the American Cancer Society provides free information and services to cancer patients throughout their journey. The organization is investing in crucial research to prevent, treat, and ultimately, cure all cancers. The ACS has played a crucial role in educating me through my journey. Their services have helped us a great deal.

Please consider joining 'Team Kate' at this year's Relay for Life, Friday May 2nd at Charleroi HS Soccer Stadium. Opening Ceremonies start at 10am. Registration begins at 4pm and the Survivors kick off the relay at 6pm.

If you cannot join us for the Relay, I ask that you each donate to our team. The Relay for Life is the largest not-for-profit event in the world. Meaning, all of this money is used for research and services!

Also, if you or a loved one has been affected my cancer, you can also purchase a luminary to be lit at the Relay and the donation will go to our team's goal.

Click on the link here to get started!

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.  

Radioactive

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.

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.