Wait . . . what?

When I started this crazy cancer journey two years ago, I knew what was facing me. I knew the reality of what a Stage IV Metastatic diagnosis meant. Never to be cured. Which I have learned to accept. But, in Cancerland, there is this something that people strive for, hope for and dream of: NED. NED stands for No Evidence of Disease. A more commonly used word for those non-cancer patients is remission. NED means that there is no cancer detectable on your scans, but that cancer cells still do likely remain in your body. You could be NED or “in remission” for years, but you will never be deemed cured; cancer is a vicious little shit and could always come back. I can honestly tell you that the past two years I have prepared myself to never hear those words spoken to me.

I had my set of quarterly scans last week. My bone scan ended up revealing a fracture in my foot. Between chemo, hormone therapies, and other drugs to rid my body of cancer that past two years it has also weakened my bones and muscles. I am at a high risk for osteoporosis so they told me to get used to stress fractures, especially in my feet. Monday I was given an air cast boot to wear for the next 6 weeks. Yesterday I talked with my team about the results of my CT and bone scans . . .


                                               NO EVIDENCE OF ACTIVE DISEASE

Wow. I really just wrote that. I had to ask a couple times if they were sure if that meant that the scans didn’t reveal any cancer and what exactly did it mean if there wasn’t any they could see. Officially, they won’t give me the NED or “remission” status because they cannot say for sure that there is no cancer in my body. However, there are no tumors that they can see. The lesions I had in my bones are healing. When I asked if it meant I was finally NED doc said “It’s as close to remission as we’ll get”. And you know what? I will friggin’ take that. I’m not cured. I never will be, but, I don’t need it because I have something better . . . TIME. This means I have more time with my family.


So now what? Well, this changes nothing as far as my care is concerned. I will be on my Herceptin treatment for the rest of my life no matter what. I will go every three weeks and get that infusion. Herceptin stops the cancer from producing rapidly and is what has gotten me to where I am today. If I stop, the cancer comes back, simple as that. As far as my bones are concerned, the lesions where they previously saw bone mets are healing. Not having active cancer in them does not mean I can now run a marathon or be pain free. Cancer has greatly damaged my bones. I have been going to PT and exercising to help decrease pain. I will still go for quarterly scans for the rest of my life as well.

I am happy. I am sad. I am shocked. I am numb. I am angry. I am about a gazillion emotions right now. I was off of the Cancer Roller-coaster for a long time, now I am right back on it. I am happy that this has happened to me. I am sad that it hasn’t happened to others. I am numb to this feeling of having more time. I am angry that I have lost so many friends to this disease. For a long while I wished for good to come of this, and I never felt it did. I stopped wishing, and I started praying. I prayed and trusted. I let go and let God. I trusted that whatever He has planned for me will be, and in the end, it will all work together for my good, even if it brings pain and sorrow. If He blesses me with being able to say that I do not have any detectable cancer in my body for the next 5, 10 or 20 years then I will praise and thank Him each one of those day. And if one day, my cancer comes roaring back, then I will ask Him for guidance, strength and courage; and I will still praise and thank Him for each one of those days, no matter how hard they will be. 

I’ve done exactly what I set out to do, and I am going to continue to do it. I am gonna keep working on that bucket list, because, I know, life is short, so I am gonna live the heck out of it.

I'll Love You Forever

Motherhood.

It’s seen me at my best moments. It’s seen me at my worst moments. It’s been the toughest, most rewarding, horribly-best role I have ever had. Motherhood is the crazy-hide-in-the-bathroom-wanna-run-away-heart-so-full-of-joy-indescribable kinda love. I’ve just always wanted to be that perfect Mom. It’s what I strived for.


I don’t know what made me value my motherhood by a series of achievements and busyness but I became the Mom that everyone asked “How do you do it?” Looking back, what I really hoped for was someone to sit me down and said “Listen crazy, take it down a notch”. Social media has been a double edged sword in my motherhood journey. It’s been great to connect with other Mom’s, but a constant pressure of how to raise your kids was exhausting. You could read everywhere and see every other Mom, and they told you how to feed your kids, organize your house, schedule your time, decorate, craft, and even spend time with your kids. Did I really need to read about how I should spend time with my kids? No . . . but I did because society made me feel that I wasn’t good enough. I was so obsessed with being the best Mom that I could be that I couldn’t see how much I was actually missing. I didn’t have time for much, including myself or my health.

Go back 3 years. I cleaned every day. I mean I cleaned. Every. Day. I made dinner every day. We barely had money to eat, let alone eat out, but I made 3-4 course dinners. EVERY. DAY. And we ate only on glass plates with silverware that needed to be washed every day. The kids made a craft at least twice a week. I made sure they had “learning time” to work on knowing ABC’s, writing their names, knowing their shapes and colors. I had to bathe them every other day. We lived on a schedule. I was a mix between Captain Hook, a Marine and Martha Stewart. Holiday’s had to be elaborate. I decorated for every season. My house had to look good. My kids had to look good. I had to look good. But no matter how much I did, or how engrossed I was in those routines . . . I never felt like I was living up to my own expectations.

And then my world came crashing down. 2 years ago, a doctor walked in to my hospital room and told me my breast cancer, which we had found out about just two weeks before, had actually spread all over my body. That I likely would never be cured and that they would try to save my life. I didn’t care about being perfect anymore. I didn’t care how clean my house looked, if I made dinner, if we ate off of paper plates, if the kids bathed, if I bathed- being perfect doesn’t matter when you’re very existence is threatened.


Time mattered. Moments mattered. Memories mattered.


All of the sudden, I wasn’t just going through the motions of life. I was living them. Really living them. The wind was like a hug from God himself. The beauty in my twins stopping to smell flowers made me not worry about getting places on time. We slowed down. I appreciated a messy house filled with toys. A book became more than a book. It was an intricate story with real meaning.


I’ll love you forever

I’ll like you for always

As long as I’m living, my baby you’ll be.



I took Stephen out for lunch, who is healing great by the way, and an elderly woman and her older son sat behind us. It reminded me so much of that book. Here I was, being driven crazy by this little boy and yet being so incredibly in love with him. The son helped his mother with her jacket, helped her sit down and they sat and talked as they ate. When they were done, he helped her up, put her jacket on and helped her out the door. Maybe God opened up my eyes to that because I will never have it. I may never have it, but I appreciated that occasion. In that instant I knew, it didn’t matter how perfect that Mother was, or how clean her house was, or how she spent time with her son- he loved her, unconditionally, just the way she was. 

The words took on a form to prepare my kids for the day I wouldn’t be around. Someday, I will die, we all will die. Hopefully, God will grant me a miracle and let me stay around for another 50 years, but if not I am okay with that. I am learning to trust that whatever may come to be will be. I appreciate more of motherhood than ever before because of this. I always feared I wasn’t perfect enough, but I am perfect. I am perfectly imperfect. And that is okay with God, and it’s okay with my kids . . . and it’s okay with me.

The Revolving Cancer Door

The entrance to the hospital has an automatic revolving door. It has two sides and allows people in and out through two rather large openings. If someone would happen to not move fast enough, or touch the door while it is moving the door stops. People come in, people come out. Much like life; our lives move- allowing us to come in to new ventures and out with old ones. When we stumble, life can pause for a moment, allow us to pick up the pieces and then back in to the revolution we go. No matter if we are entering a new phase in our life, or leaving behind another, we must use the door. The revolving door for a terminal cancer patient, however, is unchanged. I can’t pause, I can’t get out, and I just keep circling; watching through the glass partition at everyone's lives on the other side that goes in and out.

I had a nice summer break, really no illnesses, crossed some things from my Mommy Bucket List, and even took a break from blogging and FB to enjoy my family more. Around the time that I was going between doctor’s opinions on whether or not to have a mastectomy, pain started in my hip and back again. What most people cannot comprehend is that for every ache, pain or slight change to my overall health, a thousand of my caretakers freak out, including myself. Is my pain cancer? Has the cancer spread? Will I go back on chemo? What if that chemo doesn’t work? Is this the end? Should I finish the plans for my funeral now? And with one achy hip you have yourself buried 6 feet under. It is impossible to not think worst case scenario when you already have cancer. You are on borrowed time. The average life span of a person with Stage IV breast cancer is 18-36 months. You always assume the worst. I am going on 20 months since I was diagnosed. I immediately thought my cancer had spread further in my hip and I knew what steps were next. First, you report it. Then they set you up with a bunch of scans. You get the scans. You go in to an emotional turmoil for the days following your scans. You think 24/7 about what those scans show. You check you’re online medical records for updates just about every minute. This is not like a cold that will go away. This isn’t a cold, this is cancer. Cancer that has already spread, and will spread further until it kills you- it’s only a matter of when. So every time you think its spread, you just can’t help but wonder- is this it?

I started the whole process, at one of my infusions, I reported my pain. Then I was ordered for 4 MRI’s of the area, after 2 immediate XRays. Then I waited. And went crazy. And waited. And planned my funeral. And waited some more. Finally the report came back and I met with my oncologist. Thankfully, the pain was not a spread of cancer, but cancer related nonetheless. The tumors in my pelvis are causing some serious tendinitis, straining my muscles. I have a compression fracture in my spine from the lesions in my vertebrae. It makes it quite hard to get around so I am going to be in to physical therapy 2-3 times a week for a couple months. We also found that my bone marrow seems pretty damaged (from chemo), and is probably what has been causing my abnormally low platelet levels. If my levels keep dropping then I will follow up with a Hematology Oncologist. So it wasn’t new metastases- will I do a happy dance? Absolutely not. Because I know, it’s cancer related. The cancer will spread further at some point, maybe it didn't today but one day, it will. I can’t move forward in life and I can’t just stop going for infusions. I am stuck. Everyone else around me moves on. Friends have babies, start new jobs, and go back to school, open a business- and I can’t do any of those. Cancer restricts me from that.

Then I noticed it. The revolving cancer door: Infusions. Scans. Repeat. Pain. Scan. Repeat. Infusions. Scans. Repeat. Pain. Scan. Repeat. Going round and round with no way to stop, no way to start something new, no way to leave. And I keep in this cycle until it stops. But when it stops for me, it won’t be so I can get out and move on, it will be because I can’t keep going anymore. It can be lonely and isolating. I watch the world pass by and pray that I, too, again someday can be worried by the mundane things of life without a care in the world. People forget. They forget I am in here all alone. They forget that I keep circling, so they hop out and move one. Such is life . . . everybody’s life. Except mine.

Now don’t get me wrong, in the stupid revolving door, many things won’t happen. My love won’t be incapacitated. My faith won’t be shattered. My hope won’t be forsaken. My strength will not be eradicated. And my soul will always be smiling.

I will live life for now, around my cancer. I will do me- I will love on my babies, my husband and my family. I will feverishly work to fund breast cancer research aimed to find a cure. I will go on in my revolving cancer door until I no longer can. And I will do so with the same courage I walked in here with.

The Cancer Isn’t Always Greener on the Other Side

After the meeting with the breast surgeon. I was feeling depleted. I never researched about women who present with metastatic breast cancer having a bi-lateral mastectomy. I guess naïve me just assumed that’s how the journey went. A vast majority of women with breast cancer receive some type of surgery, even ones who have a complete response to chemotherapy will have mastectomies. I didn’t have any reason to assume I was different. Until that meeting.

I don’t think the breast surgeon took in to account my mental well-being. I never was asked what I want. She saw studies, she saw numbers, but I don’t know that she saw me. She told me how she thought I would feel, not knowing that it wasn’t really my outlook. I had my mind made up since my diagnosis that this would happen. I never questioned it. Any time I had asked my oncologist about having the mastectomy, he never led me to believe otherwise. If I had been told at the beginning how controversial the surgery was, and that it just wasn’t for me, I would have never been so dead set on having it done. My oncologist told me once that he felt that I would have a better overall outcome as a result of having the surgery so I had set it as a goal. If I reached that goal, it meant I was essentially doing better. There was this obvious tension between my two doctors. They didn’t agree, and my breast surgeon didn’t try to sugarcoat any of that. She blatantly disliked his opinion and there was no room for compromise. Again, what she wasn’t understanding was that if having my breasts removed meant that I had a miniscule chance of living even a day longer, I was willing to do it. She just didn’t hear it, though. She just didn’t seem to get it.

 She had me sent for two additional tests, a breast MRI and a mammogram. She called me the day after and told me I still had a very small spot (6mm) of cancer in my right breast. The she said “You know, I read your blog”. I wasn’t quite sure what to think of that. Maybe she read of my pleas? Maybe she understood a patient’s perspective better after reading it? That didn’t appear to be the case. I never once heard “I understand where you are coming from. I understand why you want this done.” She only defended her actions, maintained her research and said she called my oncologist about my blog. I suddenly felt violated. As if my Mom had just read my diary and told my Dad on me. I was not pleased.

There is a physical aspect of cancer and a mental aspect of cancer. You can’t be in the profession of dealing with cancer patients and be narrow-minded. There isn’t only black and white. There’s a lot of grey. Emotions play a huge role in the life of a cancer patient. Only 30% of breast cancer patients are metastatic which puts them in to a completely different category than other staged patients. The cancer has already spread and we will die as a result of it, it is just a matter of when. Our lives revolve around trying to stay alive. It’s mental. Most patients that doctors deal with are just looking to get through their diagnosis; do what they have to do to get it over with and move on. We cannot. We will never move on. Cancer is intricately woven in to our daily lives for the rest of whatever time we have left. Do you think that because I already know my cancer has spread that this makes things easier or better for me? That the decisions I make should be effortlessly assured? Absolutely not. In fact, it makes every single choice ten-thousand times tougher. I know the cancer isn’t always greener on the other side. I know that the other side is physical pain and disfigurement. BUT, I would rather have a peace of mind; knowing that a secondary breast cancer will never occur in my breasts. I’ll take the pain over chemo and radiation any day of the week. Being on this side of cancer: the bad side, the “oh shit” side, the inescapably horrendous side of cancer, the side you think of twenty-four hours of every day, unequivocally sucks. Honestly, anything looks better than the emotional tolls that havoc my mind.

The whole saga put me in a pretty deep depression. I felt dismissed. I felt isolated. I felt alone. It was taking a toll on my family, too. One night my five year old cried the whole night over anything and everything. She begged me to not put her to bed, she wanted to sleep with me. When I told her no, she cried hysterically. I finally asked her why she was so upset about this and that’s when my heart broke in two.

“I never got to see you when I was in school. Now I’m outta school and you’re always at the doctor because of your cancer!”

I just want to live longer. This girl, she can’t live without me. She needs me. All my kids do. My son, he needs me to be there. They need my guidance, they need my discipline and most importantly, they need my love. If I have to trade in my breasts to do that . . . then so be it.




I met with my Oncologist last Thursday and reported that my liver and bone mets are still stable. That’s about all I can ask for: stability. I expressed my concerns over the consultation with the breast surgeon and I told him “I am not trying to be cured, I am just trying to live as long as I can”. To which he replied, “Well, I am trying to cure you, and if you want to have surgery, then why not?” He never has me convinced of what he knows and that is that there really isn’t any upstanding evidence to prove that a bi-lateral mastectomy on a metastatic patient will “make things worse” or not do anything at all. That fact remains that no one, no doctor in the universe, knows if the surgery will improve my overall prognosis because there isn’t enough supported research studies. He agreed that if I am at a higher risk of having a secondary breast cancer, then my breasts need removed. I finally heard “I understand where you and coming from. I understand why you want this done.” A giant sigh of relief hit me and a smile swept over my face.

The consensus is this: If this breast surgeon doesn’t want to do this surgery, then we search for one until we find one that will. Simple as that.

It’s My Body and I’ll Hack Off My Boobs if I Want To

Having metastatic breast cancer . . . presented at initial diagnosis . . .  at 30 . . . with a genetic mutation . . . is a few things:

1.    Rare.

2.    Unique.

3.   Difficult.

4.     Sucky.

Rare: to be diagnosed with breast cancer under 40 accounts for only 7% of the population with breast cancer. Unique: About 6-10% of patients are Stage IV (Metastatic) at their initial diagnosis. Difficult: It can difficult to treat and manage metastatic disease and the median survival rate is 2-4 years and even lower for women under 40. Sucky: I am this huge ball of rarities that no one really seems to know what to do with. I don’t fit in to the “norm” metastatic breast cancer group, young cancer group or breast cancer group. It is very isolating and frustrating.

After I met with the breast surgeon on Thursday I felt defeated and worn. I have been in this journey for 18 months. I am coming upon the average survival rate ranges for women my age. It has left me feel very anxious most days. I have prepared myself for 18 months to have a double mastectomy. Ever since the primary tumors in both of my breasts no longer showed up on the CT scans I was told by my oncologist that after a few stable (no new lesions/progression) scans that I could have a double mastectomy.

See, here’s where the gleaming bag of rarities comes in. Since I was initially diagnosed Stage IV, I was never offered a double mastectomy to begin with because I needed to start chemotherapy right away. We needed to reduce and try to stop the progression of my cancer. Simply removing my breasts would not work. The other 90-94% of breast cancer patients who are Stage IV, more than likely already had some type of surgery. They had been treated for breast cancer prior to their Stage IV diagnosis. It was hard to “fit in” with them. Not having gone through that part of breast cancer made me feel as if I was the new kid with glasses in a 3rd grade class. I looked at the double mastectomy as a goal I worked towards. Fun goal, huh? In my mind, reaching this goal meant that I was doing well.

“Why?” seemed to be the question of the day with my breast surgeon. Why give a woman whose disease has already spread a double mastectomy? She was very against me having a double mastectomy. She in no way agreed with my oncologist, even laughing at the research he quoted to me. She was very thorough and explained her own research stating that in another country there was a study conducted with women with metastatic breast cancer. The trial had some women receive a bilateral mastectomy and women who did not and they followed their progress for about 2 years. The research claimed to have shown absolutely no benefit to having surgery. She told me the surgery would not benefit my quality of life. All I heard from that was “You are going to die anyway, so what’s the point”. I was not worth the surgery. She explained the risks involved in the extensive surgery trying to almost scare me out of it.

Besides a couple of the very selfish reasons I listed above, I also have some very reasonable rational. When you are diagnosed with Li-Fraumeni Syndrome it is suggested that a woman with breast cancer not only has the breast with cancer removed but that she also has the other “healthy” breast removed. The instance of having a cancer return or developing a secondary cancer is very high for me. This would eliminate the chance of having cancer return to my breasts. Secondly, while it is controversial, there is research that suggests a woman with metastatic breast cancer that has a double mastectomy can improve her prognosis by as much as 2 years. Although, according to the breast surgeon, that study is wrong.

Lastly, and most importantly, when I started this journey I made myself a little promise. See, when our angel, Shannon, was born we didn't know she also had a congenital heart defect. The neonatal cardiologist met with myself and Steve and told us that she only had a 1% chance of surviving surgery. We made the hardest decision of our lives by removing her from life support. The “what ifs” have plagued me, and I always wondered “What if she was that 2%”, “What if she had made it through surgery and lived”. I felt as if I gave up, I let her die without knowing if she would have made it through surgery. I vowed to never do that again. I promised myself when I was diagnosed that I would fight, no matter how small the percentage, no matter how slim the statistic. If this surgery could possibly extend my life, even if it was by 1 day- I would do it.

Even with all of the reasons I gave, she still is against me having a double mastectomy. Ultimately, (she said about 10 times) it is my decision.

I thought I was going to break down in the office. I was so upset. I felt officially defeated by this stupid cancer. I was so confused by the disagreement between the two doctors. It just didn't make sense. If someone told me at the beginning that surgery would never be in my cards- so be it, I would have accepted that. But I have been told for months not only could I have it done, but that it would potentially improve my prognosis.

After researching the buh-jeebezes out of everything she told me, I will say she still doesn't have me convinced that it won’t help my overall prognosis. Apparently, a bi-lateral mastectomy in a metastatic breast cancer patient is very controversial. Some research says it benefits the patients, some says it doesn't. There are only a handful of studies conducted regarding this subject so it is very hard to say whether is actually extends life or not. I decided to ask some other women who are also Stage IV to see if there is/was anyone in a similar situation to mine. Not too many. One woman with Stage IV breast cancer actually sent me a message telling me to stop worrying about my breasts and worry about saving my life. Another told me that the surgery is not something I should take lightly. And one even suggested I am not undersdtanding the toll it will take on me. Really?! I am trying to save my life! I know the risks involved. I know what a traumatic surgery this will be, emotionally and physically. I would not voluntarily get my boobs hacked off for the hell of it. I feel that this I something that must be done to live a longer, fuller life with my family. Do you really think I care if I have boobs or not? Um, no. To say I was surprised by some of the responses is putting it lightly. Most of the women were very supportive of the “It’s my body and I’ll do what I want” approach and suggested me getting a second opinion.

The surgeon ordered me to have a breast MRI and mammogram. She wants to see if there is any evidence of cancer in my breasts that other scans might not show (she isn't convinced that the CT scan is very accurate). She wants to present my case to the other breast surgeons and oncologists at the hospital’s weekly conference. This would be a second opinion of sorts. That will be the determining factors of whether or not I will have the surgery. If that isn't stressful enough, I also have my quarterly scans. This time it’s my CT scan and bone scan. Scans = Scaniexty. More anxiety . . . yay.

It’s just so completely frustrating. I just want a shot at living longer with my family. Is that too much to ask?

I Didn't Know You Were a Doctor!

Ever since my diagnosis in January of 2013, I have been given tons of unsolicited medical advice on what cures cancer. Everyone I knew, and even didn't know, turned in to highly educated medical oncologists. Any herb, supplement, fruit and illegal substance has hounded its way in to my news feed or Facebook page. Everyone knew someone, who knew someone, who knew someone who was cured of cancer by smoking or ingesting cannabis. Which, is a fancy name for the very illegal substance marijuana (married to a cop here, folks!).  A sister of an acquaintance was cured of cancer by sprinkling turmeric on her food. I should eat the fruit of the tree on the tallest mountain, that sits next to the purple primrose on a Saturday evening at approximately 8:02 while standing East on my head in a country I cannot even pronounce because if I didn't know, that cures cancer. And there’s the ever popular “cancer foods” that I should eat which prevent cancer. Prevent? I think we are a little late for that. And my ever favorite- of course, the pharmaceutical companies do not want me to know any of this. It's a big conspiracy. 

 I wasn't aware of your medical degree! I didn't know you spent roughly 14+ years working on your doctorate specializing in oncology. I mean let’s break it down, shall we.

You did all this:

-Finished Pre-med or obtained your Bachelor degree which takes approximately 4 years 
-Went to medical school which averages 3-4 years 
-Enrolled in a Residency program for 3 years
-Then took a couple months to study for your Board to qualify for fellowship 
-THEN worked on your fellowship for 2-3 years focusing on oncology 
- And finally completed your Board examination in Oncology which can take about 6 months

Congratulations, Doctor! And in the meantime, you ran clinical trials on your cancer curing hoopla, which can take years to get to human trials and YEARS in human trials before becoming approved.

Um, hello, I have cancer. I am pretttttyyy sure if there was a cure, I would know it before you or your sister, brother, aunt, great uncle or second cousin would. And not that I am a doctor, but I got me one of those. A specially skilled, highly educated, CHIEF of Oncology at my hospital. He’s the big cheese. I think he would be greatly offended if he didn't know there was a cure for cancer before the rest of the civilian population.

There is no cure for cancer, I don’t care what anyone says. I don’t care what you read and I sure as shit don’t care what your momma told ya! Please, read this carefully: Every single cancer cell in each person’s body is absolutely unique. There are no two people with the same kind of cancer cells in their body. Each person reacts differently to the drugs they use to treat cancer. Because, that’s all they do- treat it, they do not cure it. Sometimes the cancer cells react accordingly to a drug and diminish with no metastasizes, which is great- however, a person with similar type of cancer could react completely differently and end up with metastasizes. There are a gazillion environmental factors to add in, genetics and so on and so forth. I can tell you of many vegans, vegetarians, HEALTHY women you have died from breast cancer. Even if one person was “cured” from the fruit of a Zabillybonbon tree that does not mean it will work for the next thousand people in line after them. Because, let’s say it together, everyone’s cancer is different!

Am I being a smart ass? Yeah, I am. I don’t mean to sound harsh, but have you ever heard of the saying “If you can’t say something nice, don’t say anything at all”? The same applies to this situation. If you yourself, have never been diagnosed with cancer, have never been through chemotherapy, the emotional tolls, side effects of radiation, the surgeries, the appointments, the heartache, the financial burdens- then you are not qualified to offer any unwelcomed medical advice to someone with cancer. How can you possibly know what it’s like unless you have been through it yourself? I know, I know, you’re just trying to be nice, and I get that, I really do; but seriously, if you don’t think I don’t know of, I don’t wish for- I don’t dream of a cure, you’re insane, because I think about it every second of every day of my life. It’s my reality. Not yours. If you want to do something nice for me, offer to cook a meal for my family during my upcoming double mastectomy, offer to help with the kids, drive me to an appointment, clean my house, offer anything other than medical advice.

Bad Days Happen

I have bad days. I have good days, too. I embrace both. They keep me grounded. I do not suppress my feelings of hopelessness, despair and desperation. I drown in those feelings from time to time but never let them consume my spirit. The allow me to do one thing: remember that in the sorrow, I will find hope, faith and love.

It hasn't been easy since I had radiation. The month of April alone I traveled over 445 miles to doctors’ appointments. And yes, you read that right four hundred and forty-five miles in less than a month. The effects of radiation were worse than chemo and what’s life without a little drama mixed in from friends or family? It was tough. I finally started feeling better this past week. The radiation did wonders to my pelvic pain and I barely have any now.  The damage to my bowel and whatever nasty stomach issue I was having seemed to have worn off. I am still a little leery about the whole “feeling better thing” because it never usually lasts long. I am taking it easy for now. I haven’t been eating super healthy as I am not supposed to be eating too much fruits and veggies because of the bowel damage and since I haven’t been well enough to exercise I get pretty worn out when I try.

I have been having a lot of anxiety about my upcoming appointment with the breast surgeon. A huge part of me does not want to have a double mastectomy. They are my breasts. Breasts are not supposed to be hacked off of your body. I know it sounds selfish but I just don’t want to get surgery. I just don’t. I don’t want to have disfigured breasts. I don’t want to be in pain. I don’t want to feel awkward anymore. Then again, I don’t want cancer anymore either . . .

I still am not sure exactly what type of surgery I will have. I thought I was dead set on having a TRAM Flap reconstruction done, which uses your belly tissue and muscles for a more realistic feel, but now I don’t know if I would be eligible for that surgery. I have a rather large vertical keloid on my stomach from having SJ and don’t think the tissue is very usable. The silicone implants wouldn't bother me but I keep reading how painful the expanders they put in to stretch your tissue are. Pain terrifies me anymore. I am a big baby . . . never used to be though.

And trust me, this is no boob job or tummy tuck. If you’d like to see pictures of how great you think this surgery will turn out, please, Google double mastectomy reconstruction. It’s not pretty.

I’ll continue to have bad days, such is the life of a metastatic breast cancer patient, but I won’t let them conquer my love for life and my family. I have to forge through to have the best days of my life.

Wherever You Are

I have had this feeling of impending doom. Seems morbid, I know. I can’t really explain it. I am just waiting for the other shoe to drop, I guess. All around me lately is other women, some younger than me, dying. Taken too soon by metastatic breast cancer. It’s crazy when I really think about the time I have left here on Earth, because frankly, when you have terminal cancer- ya can’t help but think about it sometimes. If I’m lucky, I’ll live 20 years with this disease, but I will only be 50. I will get to see many things that the kids accomplish like graduating high school, and going off to college but I will miss their budding future. Chances are I will never see one of my grandchildren and more often now it hurts my heart to see grandparents interact with their grandchildren because I know it will more than likely never be me. As this wretched cancer would have it, I estimate I have 5-10 years left. There’s just too much in my bones, it will spread further at some point. It’s just so hard to see a future that has me in it.

Part of this ominous perception is in part due to my overall current health. I am sick. And I am so sick of being sick. Every day I am nauseated to the point of being drove in to my bed, unable to move for hours. I feel like I have a rock of acid in my stomach and it hurts so bad that it brings me to tears. I have diarrhea 7-10 times a day every other day, no matter what I eat or don’t eat. And if I am not going to the bathroom, I feel like vomiting. I thought to myself the other day, “This must be what the end feels like”. It’s no way to live. Tis' the life of a metastatic breast cancer patient: ups and downs, happy and sad, sick and not. 

It was the worst on Mother’s Day. Of all days for it to happen, a day I want to bathe in the love of my family- it had to happen that day. I spent most of the day sleeping and in bed. Steve had to put the kids to bed and Stephen fought him so hard. He cried and cried for me. “But we have to sing our song” he cried. And then I heard what would break my heart in two; my 4 year old son singing our song by himself. “I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.” We sing this together every night because I know one day I wouldn't be able to sing it and I want him to have that memory . . . always.

It’s as if I am prepping my children, subconsciously, for life without me. Because one day the time will come but I don’t want them to be sad. I want them to remember how much love I had and always will have for them; and that nothing even death can take away my love. 

I wanted you more than you ever will know

So I sent love to follow wherever you go.

It's high as you wish it. It's quick as an elf.

You'll never outgrow it...it stretches itself!

So climb any mountain...climb up to the sky!

My love will find you. My love can fly!

Make a big splash! Go out on a limb!

My love will find you. My love can swim!

It never gets lost, never fades, never ends...

if you're working...or playing...or sitting with friends.

You can dance 'til you're dizzy... paint 'til you're blue...

There's no place, not one, that my love can't find you.

And if someday you're lonely, or someday you're sad, 

or you strike out at baseball, or think you've been bad...

Just lift up your face, feel the wind in your hair.

That's me, my sweet baby, my love is right there.

In the green of the grass...in the smell of the sea...

in the clouds floating by...at the top of a tree...

in the sound crickets make at the end of the day...

"You are loved. You are loved. You are loved," they all say.

My love is so high, and so wide and so deep,

it's always right there, even when you're asleep.

So hold your head high and don't be afraid

to march to the front of your own parade.

If you're still my small babe or you're all the way grown,

my promise to you is you're never alone.  

You are my angel, my darling, 

my star...and my love will find you, 

wherever you are.

~ Nancy Tillman

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

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.