The biggest blessing...LOVE

E asked if he could read my blog the other day, I thought it would be a better idea for him to help me write a post.  Surprisingly he agreed. As we all know, it's not always easy to express our feelings and talk about hard things, but I couldn't be prouder of his willingness to talk with bravery and honesty.

He told me to ask him questions and he'd answer them. 

What kind of feelings do you experience as a child of someone with cancer?

Sadness, anger and discomfort, especially when my parents are not home because I get nervous about what's going on. 

What is the best way for you to handle these feelings?

I  feel comfortable asking questions to close family members, especially my mom in my case. Sometimes I get angry at my loved ones and the way their schedules have changed, but you have to support them.  

What are some other ways you could deal with the situation?

If you feel uncomfortable you could always read kids books about parents who have Cancer.  My favorites are "The Cancer that Wouldn't Go Away" by Hadassa Field and "When Someone You Love Has Cancer" by Alaric Lewis (Click on the titles to connect directly to Amazon).

There are many ways I help my mom, such as chores and lifting heavy things. It may seem like I'm doing more work around the house but really, I'm just helping my mom. 

Sometimes my mom having Cancer is very hard because I think about her dying.  She had it before and she said it would go away. When she and my dad told me it was back, it was the worst day of my life. It's still so hard but I distract myself by playing video games, reading books and playing board games. 

It's always ok to express your feelings, and sometimes you may even cry; that's ok too.

And don't think that just because they have Cancer, they can't have fun and still do things with you. My mom and I like to go on walks and this is a way we can talk about things. 

Thank you for listening, E.

Remembering back to the day we told E I had Cancer again was so painful. How do you even begin to explain such yuck?! The honesty of it hurts.

The hardest part of this disease continues to be the uncertainty of it all and how it affects all my loved ones, especially my children. We are all learning to be present in the current moment.  We can't predict the future but we can live our fullest life each and every day. Our greatest blessing is being able to lean on and love one another without knowing completely what tomorrow brings. 

Faith over Worry

It's been just about two weeks since my 5 day visit to the hospital.  The thing about this Big C yuck is that things are constantly changing, and ridiculous and unpleasant side effects are a daily nuisance. 

Due to lower white blood cell counts, I'm more susceptible to illnesses, viruses, infections and all sorts of other stuff. This month has been very unpleasant with rashes, exhaustion and infection. I ended up with an extremely painful bacterial infection in my mouth and throat, causing sores. I tried to take care of it at home with medications, but it became evident when I couldn't eat or drink without extreme pain that I needed to visit the hospital. Once there, IVs and strong meds helped and 5 days later I left pretty much pain free.  Although I still have some side effects lingering, things are much better. I'm very grateful to have resources to go to when things at home are not working. I'm also grateful once again to have the support of so many. My soul sister and I had sleepovers and hubby came to visit multiple times, while my parents took care of my two loves, E and Little Miss, at home. 

Staying in the hospital for any length of time is not exactly pleasant.  In fact, it sounds grim, but leaving to go there, I wondered if I would be able to return home. The fact that I have a terminal illness never leaves my thoughts. The constant worry when you have Metastatic Cancer is difficult to overcome and being in a hospital 24/7 feeling terrible made it even harder. It's a constant challenge to remain positive and keep the faith. 

This is when it's so important to take each moment one at a time while doing your best to keep the Faith. The Team I have cheering me on definitely helps to keep me grounded and for that, I thank all of you for your consistent love and support.  I feel loved and blessed on a daily basis.

My main reason for writing this post is to explain once again that I often feel like I have no idea what I'm doing and if what I'm doing is actually helping me to feel well. This Big C thing is so exhausting, both physically and emotionally. Although I'm trying my best to keep the faith, I do not have it perfected. I worry... a lot. I'm generally happy and you may see me smiling in most pictures, but remember, that's the highlight reel. Behind the scenes, there is often exhaustion, anger, frustration and weepiness. But somehow, my highlight reel continues to outweigh the yuck the Big C brings into my life even though some days are a struggle. 

Fighting Hard...

On January 25, 2017,  I posted this on Facebook "today I'm thankful for chemo. And I'm grateful for all of you. My CT scans showed shrinkage...whoop, whoop!" Sorry to those of you who follow this blog and not Facebook. I didn't mean to leave you hanging. 

It's been a while since I've had a good report from scans. So long, that when the oncologist told us, I think we all stared blankly at her and almost didn't know how to react. Shrinkage...the little f----ers shrunk? Whoop whoop!

 For now we will continue using the same tool from the toolbox and keep hope that it continues to be effective. During my visit I got my infusion of chemo and here we are about two weeks later dealing with the side effects most people don't see or hear about.  Truthfully, I've been struggling with feeling good and dealing with yuck. I shed tears almost everyday because I'm so exhausted and tired of the Big C.  Mentally and physically it can be a struggle.  Don't feel bad for me, just know that this is often the reality of those of us with MBC. Maybe it's not visible from the outside, but the nausea, exhaustion, anxiety, seizures and so many other things are behind that seemingly average looking person who has a body full of cancer cells.  We have various side effects that often seem to take over, but most of us are willing to play on and take the good with the bad. Thanks to our support systems we are also able to continue fighting hard. 
  

 I'm hoping that tomorrow is the day things will turn the corner. It's a struggle, but one I'm determined to fight and conquer. 

In the meantime, my E is now a teenager. 

It's so hard to believe that it's been so long since I answered that phone call saying he had entered the world. We celebrated his birthday with family and he enjoyed some of his favorite people. Although his spirit often challenges us as parents, he is truly a sensitive and kind little boy and works hard helping his Momma these days. I love him more than I can possibly express.

Little Miss had her Red and White School Dance. This was her last dance at the elementary school. 

Today and tomorrow we are enjoying our first official snow days of the season. I'm hoping the kiddos will enjoy sledding. They need some fresh air and time away from SCREENS.

Living with challenges...

I sit here in front of my computer screen and STARE, not really sure what to say. Tomorrow, I go for the results of the rest of my scans. The different scenarios of what could be the outcome of Monday's scans and tomorrow's blood tests occupy my mind. I try to remain positive and hopeful, but also know that things don't always work out that way. What I am hoping for is a continuation of last week's brain scan where things appeared to be stable. 

The most recent way I try to handle things is to take what I'm given, ask the questions I need to, fight for what I think will be the best treatment and carry on as best I can. This is typically how I have tried to handle things from the beginning. Now I think I'm just becoming confident enough to challenge the thoughts of the doctor while trying to incorporate all those working with me to give me my best life. 

This job is a daily challenge, from waking up in the morning to going to bed in the evening, and everything in between. I'm exhausted most of the time and feel like I could sleep 24/7. I'm not driving, but I have to coordinate the daily rides my children need to get to their activities. I'm blessed to have so many willing to help us out. For those Metastatic Fighters who are still working in paid positions, you are amazing. I can only imagine how difficult it is most days and I think it should be a requirement for you to have a comfortable resting place when you need it.  Keep up the fight,  fellow warriors! We're all in this together, in one way or another.

The end of the month of pink....

When Metastatic Breast Cancer rudely entered my life in June 2015, I immediately went into panic mode and started predicting my morbid future, afraid that I wouldn’t even make it through the next year.

I’m blessed to have a huge support system and quickly I started to learn to take my life one moment at a time, hour-by-hour and minute-by-minute. Just as though life has no guarantees, neither does the diagnosis of MBC. It’s been over one year now. This diagnosis is a full-time job that has changed frequently and continues to have too many bumps to keep track of. Some days are steady where I feel some moments of normalcy; other days I have panic attacks that take over the calm I try so hard to maintain. Having this disease is mostly scary and part of the fear is never really knowing what is coming next, but, when you think about it, none of us are able to predict the future. We can simply live the best life we can in the present. So although my children are still only 9 and 12 years old and I fear how much time I have left with them, I do my best not to waste any time worrying about something that I have no control over.

I wish I had the magic potion for surviving MBC but that doesn’t exist (yet) so I will tell you a few things that have helped me move forward, even on the days that are the hardest.

As my Memere used to say, “there is nothing so bad that something good doesn’t come out of it.” This is especially evident when living with a disease such as MBC. You can find something positive; sometimes you may just have to look at it with extra strength binoculars.

Try not to let one set back determine the future, perhaps it’s a bump in the road and not a death sentence.

I’ve been open with sharing my emotions and although it’s not always pretty, it’s always real. Let yourself cry if you have to, share your emotions and don’t feel like you have to fight those tears that come naturally. I would urge you, however, to only wallow for a short time, vent, journal, meditate and then move on. I personally benefit greatly from going to therapy weekly. 

So many share this disease, but each person’s story is different. My story is unique and how I react to it is as well. Learning to have hope and faith in my own journey continues to be a challenge for me, but with the love and support I receive, there has been some progress. 

I started this blog entry at the start of the month to post as part of raising awareness through Metavivor.  Because I don't always have the energy or stamina to write, I didn't quite make it to the deadline and thus it has become my own post. Hopefully it will be a source of some awareness for those who can benefit.

This Monday we will be driving very early to Dana Farber. It's that time again for more scans, definitely not a time I look forward to, in fact, it scares the poop out of me. It's actually a challenge for me to hold it together this weekend knowing Wednesday my oncologist will share the findings of the latest tests with me. This is when I do my best to remain hopeful and positive because it is not helpful to do otherwise. 

It's my birthday!

Here we go again. It's been almost a month since my last post. I continue to heal from the brain radiation and it has become a bit more difficult for me to express myself. I'm a slower thinker, I have terrible word retrievel, my balance and strength are not what they used to be and I'm just plain tired most of the time. Using our brains is hard work, and for me that's even more evident and exhausting.  That being said, I'm doing ok and the doctor is confident that the procedure worked. We will know for sure in October when I have my brain scan.

But Friday is my birthday and we are going to celebrate...the everyday moments of life. And I will proudly announce that I turn 44, because folks, getting older is a privilege. 

 While thinking of my big 44 coming up tomorrow, I was also reminded of the gifts I have received from people on a daily basis. 

 I have been gifted by family, friends, and complete strangers since being diagnosed with MBC. Here is a short excerpt from the past 16 months. Maybe you're interested in continuing to spread the kindness? I didn't wanted to start with too extensive a list in one post, so for now, here are 10 ideas.  

 Gift Ideas 
(not in any particular order except for #1)
and maybe I should also admit that my favorite gifts are the ones that do not cost a cent, but maybe just a bit of time.

1. LOVE

2. Handwritten cards and notes

3. Handmade gifts (from kids and adults)

4. Messages through email, Facebook and texting (short, long, or in between).

5. Flowers and plants (anything to show life's beauty).

6. Jewelry. Lisa Leonard is my favorite site.

7. I'm a quote girl and when it's paired with artwork, it's even better. Valerie Wieners and Kelly Rae Roberts are two of my favorites.

8. Organic Tea and Tea Cups are good for tea drinkers.

9. Comfortable attire is always a good choice. Things like socks, slippers, and pajamas pants are some of my favorites. 

10. Kindness...which seems to be a consistent theme with all these ideas. I'm a recipient of this priceless gift daily.

Happy Birthday to me, now go out and do something kind for someone...create ripples that are infinite, and spread the love. 

And, I have one last birthday wish for me, perhaps it's a tad selfish, but before ending your day tomorrow, educate someone about Metastatic Breast Cancer.  I'm wishing for many more birthday posts in the years to come, all written by me.   

Here is a great link to share. 

Thank you all for being the best damn support system a girl could have, much love. 

"The more you praise and celebrate your life, the more there is in life to celebrate."

-Oprah Winfrey

PS Look for information, coming soon, about our fundraising opportunities for MBC.

The art of living...

Fridays are usually my favorite days, but today, not so much. At 1:40pm this afternoon, I'm scheduled for stereotatic radiation. Basically, it's a precise radiation procedure to specifically target the two spots on my brain that are not stable. Although this is a routine and "simple" procedure for the radiation oncologist, for me, as the patient, it's quite intense and intimidating. I'll be happy when it's done and even happier when they confirm it worked. Last week I went in to have my mask made...I had visions of the movie Silence of the Lambs, right down to the part where I had to bite down on a piece of it so my mouth remains still during the procedure. 

Sometimes the yuck takes over my day and I can't help but focus on the way it's messed up things. Questions and concerns from my two loves tend to rip at my heartstrings the most, but we are all doing the best we can and helping one another to get through the hard moments. 

The Big C doesn't have to be all doom and gloom. Every day is a challenge, some days more than others, but I'm still very much alive. I have learned to consciously choose to focus on things that are not part of the yuck...I'd rather not be defined solely by the big C because I'm more than that.

I'm still able to be a momma, show creativity, have conversations, and go for walks. I have a soul that yearns to feel at peace, love others, laugh and feel loved. 

Cancer can go screw itself because I refuse to let it overtake my life. It doesn't deserve that much attention. The biggest payback I can give it is to find happiness in the everyday and LIVE.

  

Waves...

When my visit to the doctor ended with my oncologist hugging me, it confirmed the fact that the visit was emotional. The yuck in my body is not leaving me alone and there are some spots, specifically in my brain and lung that need to be taken care of. My doctor feels it needs a specific, stronger treatment to put a stop to it. Monday we will meet with the radiation oncologist to hear the options for the brain and Thursday I start intravenous chemotherapy. Although both areas grew only slight amounts, it is concerning because of where they're located.  

Although I enter each visit with a cautiously optimistic attitude, I kind of felt like yesterday I was shoved off the wave I was finally learning to surf. This has been a rough year, constantly full of treatments, medicines, stalking the Big C and making changes when it starts acting up. It's not only frustrating and exhausting to receive this kind of news, it is terrifying! Honestly, a visit like yesterday makes me feel that much closer to the end of the list from the tool box of treatments. Then what? Well, we all know the answer to that and that is why it's terrifying. Apparently, I still have a large list to work from, but it doesn't seem to make this any easier. I'd rather not become an expert surfer, having to ride all these wild waves everyday. I just want a smooth ocean for a good chunk of time. 

I'm probably working harder at this than I have ever worked in my life. Taking supplements, maintaining a healthy diet, using essential oils, vitamin infusions is more than a full-time job. I currently have multiple doctors weighing in on my treatments and I have to manage all of the them. When I have been working this hard and then I get news like I did yesterday, saying it's frustrating is an understatement.

Luckily the support system I have is supplied with endless kind words, hugs, and love and for that I am grateful. 

In the moment I don't always feel like I can do this, but somehow I'll pick myself up and continue to ride the waves and maybe even get better at it as time progresses. 

"Sometimes you just have to ride the wave you're given."

Do it anyway...

About a month ago, I was having a conversation with a friend and the unknown fact that I swam in high school came up. I wasn't a star swimmer as I only participated during the school swim season. But, I could do all the strokes and the butterfly was my favorite. Having this conversation got my interest peaked to test out my stroke the next time I was in the water, and I even told her I would text her a video. 

This past week we were on vacation and I used the resort pool to test out whether or not I was continuing to live in my former life. I'm happy to say it was similar to riding a bike and I did it. My legs are a bit weak-looking from the yuck in my body, but for a 43 year old with metastatic breast cancer, I was proud of myself...sorry for the bragging. 

A couple of months ago, I couldn't sit in a car without intense pain and this week I swam the butterfly stroke in a pool. If you would have told me months ago that I would have done that, I wouldn't have believed you. But I even proved myself wrong. 

When you doubt yourself, I challenge you to do it anyway. I think most times you'll be surprised and you'll be glad you made that decision. Most rewards are a result of risks and challenges. 

It's painful for me to look at photos and remember the memories before my new life started last summer. The posts from Facebook pop up from years ago and it brings tears. My old life is gone, only memories and experiences keep us connected. I can hold them in my heart and be grateful they were a part of my life, but if I get too stuck there, it's not helpful. 

So, this small moment, where I was able to connect the old with the new helped me to see that maybe it's not all gone, but merely transformed. It also reminded me to have faith; regardless of the challenges life experience's possess, go for it and do it anyway.  

The Real Deal...

As promised, I'm going to share more of the details from my visit to Dana Farber last week. I guess I think it's important to keep all of it real. It was a positive visit, but honestly it's truly never easy, and this day was no different.

Our day started before 7:00am when we left the house to arrive by 8:00am for bloodwork; bloodwork that revealed that my White Blood Cell count was still in the gutter and that I had to continue to wait for it to go up before restarting the meds because of my safety. It also resulted in a smaller dosage that hopefully will still attack and kill the yuck. And still, here we are a week later, and I find myself in the same predicament. My WBC are moving like a sloth and apparently in reverse. Getting that news on Tuesday was certainly frustrating and left me feeling a bit paralyzed and defeated. 

 Back to last week - the visit also included an appointment with my oncologist, an infusion of some meds for my bones, two painful shots in my tush and my first visit with a neuro-oncologist, including a thorough exam, done by his fellow, of my brain function, of which I passed with flying colors. 

Most of the two hour visit was also spent talking about my symptoms and experiences I've had prior to diagnosis and after. He concluded that it was probably best to prescribe a low dose of some medication for seizures, as it is his determination that the long term issues I've had with my eyes and the numbing sensations in other parts of my body could be small seizures. I was not surprised, but actually a bit relieved, because I've "known" for some time that these vision and numbing sensation episodes have been small seizures; I know my body, sometimes too well. The hope is that by being on the meds, things will not be as frequent and I will not have to panic every time it happens. He is really not worried about the "seizures" because they come and go, which is a good sign. He just doesn't want the small to ultimately become big, thus the meds. The meds have been a simple addition to my daily regiment and if they can give me some peace of mind, it is certainly worth taking them. 

Eight hours later after more, unscheduled bloodwork, we finally left, exhausted from the day.

This truly is a full-time job and on this day, I undoubtably worked my entire shift with few breaks.

So as I continue to wait for my WBC to rise, I try to take advantage of the less side effects I seem to be experiencing and reflecting on the positives, like today's visit to the radiation oncologist when she said, "Well, I think you're doing outstanding." She doesn't know all the ins and outs but as far as recovering from the radiation, she was very pleased. And her being pleased, gives me some relief as well.

And a welcomed distraction to the Big C has been this nest of newly hatched birds. I'm slightly obsessed with getting a glimpse of them on a daily basis. 

"The Real Deal is always going to win in the end."

Finding small victories in the year of yuck...

This past Wednesday marked one entire year since I received the dreaded phone call that changed things...forever.

This year has been filled with enough yuck to fill an entire book, with some chapters titled Whole Brain Radiation, Nausea, Xeloda, Blood Tests, Supplements, Side Effects, Pain, Exhaustion, More Radiation and Scans. I've also realized it is filled with more than yuck as well, and that part may have even more substance. Those chapters could be titled Hope, Faith, Loved Beyond Measure, Strength, Family, Vitamin C, Better Veins, One Day at a Time, Small Steps, Support, Still Here, Blessed and Growth.

Looking back on the year, I have experienced so many emotions, and to say it's been hard is an understatement. Some days I struggled to know how to get through. 

But, hard things can teach us so much if we're willing to learn. I have become better at accepting help and even asking for it when I can't do it all myself.  I don't have to do this alone and why do I even need to when I am surrounded by such a support system? I learned that I have been blessed by so many people who are  willing to step in, encourage and truly love me. I'm am loved and supported and treated with immense kindness from people in my life. I have learned the true meaning of strength and know that sometimes it means breaking down and relying on others to hold me up. 

I've also learned that the more layers that are peeled off, the more I realize the blessings in the everyday, ordinary and mundane. I'm more in tune to the small daily victories I experience, like being able to go for a walk, watch my children play soccer, make a meal for my family, weed my garden, paint my front door and mop the kitchen floor.

"Nothing will ever go away, until it teaches us what we need to know."
-Pema Chodron

I continue to do my best to be patient with myself. If I wake up in the morning with nausea and exhaustion it doesn't equal a bad day, it merely indicates a rough morning that could likely get better. My new life consists of moments, some big, but most small victories I have learned to recognize in the everyday. 

"I've learned that I still have a lot to learn."

June...

Ever since I was a little girl, I knew two things for sure, that I wanted to be a mom and a teacher. My brothers were my first students in the basement of our home. I created lessons and took great joy in correcting their work. My desires never changed, I went to college for teaching and became a special education teacher and have been for over twenty two years. Several years after becoming a teacher, I became a momma. 

Although the role I have valued most has certainly been as a mom, it cannot be denied that I also have a passion for teaching, especially in the area of special education. I find great joy in figuring out how students  best learn and helping them to discover just how capable they are as learners.

I took time off from teaching when my children were born and when I was diagnosed with the Big C both times. Since last June, I have taken a leave of absence from a job that I loved. Although I've ignored the fact that I would ultimately have to leave my job, it is now a year later, and it's time for me to face the music. Metastatic Breast Cancer allows no plans, as things seem to change constantly. Because of the uncertainty of MBC and how it has taken over my life, there is really no other option for me right now. It makes me angry that the Big C has caused this, but more than that, it makes me sad to know I have to leave one of the things I love most. It is hard for me to close this chapter of my life and even though I really have no idea what will happen in the future, I know that for now, I have to stop teaching. I'm truly hoping that someday this chapter will have to be edited and reopened, but for now, this is my reality. It's not easy for me to leave something that seemed to be one of my purposes in life, but apparently there is something more out there for me. Right now, I'm still in the process of figuring out just what that is.

In the meantime, I will be a momma to my two children and I will focus on other things I enjoy, such as crafting and photography. 

This has been a hard transition to go from teacher to full-time Big C patient, but we all know now that I can do hard things.

"The less routine the more life."

Amos Bronson Alcott