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!