Wednesday, April 12, 2017

100% Loved...

It's been a while since I have connected with my blog readers.  So today seems like a good day to do so. 

It's hard to believe our Little Miss just celebrated her tenth birthday. She's pretty fantastic, creative, sensitive, intuitive and overall beautiful. We feel blessed each and every day to have her  as part of our family. And then there's E who is now officially a teenager...UGH! He too, is full of great qualities and is growing more mature each day. 

Having two children with recent birthdays definitely makes me extra sensitive. Singing "Happy Birthday" just brings the reality of my illness to the core and I can't help but work extra hard to have faith that I'll have many more celebrations to be a part of.

It's not always easy to be Little Miss or E these days. The Momma they have currently has her own challenges and struggles in life and it is certainly not the same one they had in their younger years. She lacks energy and drive and relies on others to keep her and her family afloat. Just as it's hard for me to depend on others to help me; I know it's difficult for my children to do the same.  

I'm asked on a regular basis how I am doing.  I generally pause and say, I'm doing ok at the moment. Then there are times when I'm not feeling great at all and I say "I'm not doing so great." The not so great days may consist of small seizures which are body parts going numb for short periods of time or very blurry vision. This is not too alarming to the brain doctor, but for me it's disturbing. I become unsteady, somewhat panicked  and unsettled. For the past week I've also felt a bit nauseous and bloated. 

I share this with you because I want you to be comfortable checking in with how I'm doing. I also want you to be ok with the response I give.  I want you to have faith but not sympathy for me. My entire family is learning on a a daily basis, maybe not how we'd like to, but we are a stronger as individuals and as a family because of this miserable yuck.

I was finding myself answering with I'm doing fine or I'm doing ok....and after a while, it wasn't making sense because that wasn't entirely true.  Now you may even get some "I feel like shit" some days.  I'm not going to try present myself as something I'm not. I'm a human with Metastatic Cancer. Some days I have energy to go for walks and play games with my kids and some days I'm barely able to rise up from the couch. 
I do the best I can each day with the support of those WHO love me. 

I think checking in on people and seeing how they are doing is a loving and kind gesture. Although the responses are not always positive and they can be scary, it is the truth and it can show first hand how strong LOVE it.

Thursday, March 16, 2017

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. 

Tuesday, February 28, 2017

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. 

Thursday, February 9, 2017

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.

Tuesday, January 24, 2017

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.

Friday, January 6, 2017

Embracing Uncertainty...

I think I'll start this post off like I've started some others...CANCER SUCKS, and the uncertainty of Metastatic Breast Cancer is even worse!  I had an appointment yesterday with my Naturopathic Doctor.  He recently had me take a test to see what chemotherapy treatments would still be effective and also reviewed recent blood tests to see how the cells to fight the little F'ers are doing.
Well, the results were not all that great and ultimately I ended up crying the entire ride home and then some. He basically said that the medicine I have been taking for months is not effective and at my next appointment I need to push for a specific chemotherapy. After the one he suggested, I have two others it listed...two!  At the beginning of this MBC yuck my oncologist said there was an entire toolbox of treatments for me.  What she did not clearly state was that I would be a guinea pig for each medicine and some would not be effective at all. Now here I am feeling like I have a toolbox that seems to be quickly running out of useful tools. So after months of chemotherapy and huge amounts of supplements, it's a bit frustrating and a downer to know it's most likely not doing what it's set out to do. It would be great if he was wrong! At the end of the month when I go for my scans I will know for sure.

In the meantime, I'm feeling pretty good, possibly due to some of the meds I'm taking on a daily basis, but regardless, most days I have an appetite, good energy and a positive outlook. And I think as a result of not having control over this nonsense, I've been purging like a madwoman. I also decided the Christmas season wasn't long enough and am keeping up my tree for at least another week.

Five years ago this past New Year's Eve, I was officially diagnosed with breast cancer for the first time. By 2012 I thought I was finished fighting the beast. But, in June 2015, I discovered it was back and I was now a stage IV cancer patient. That day was so hard and I barely remember it. What I do remember is that in the past year and a half I have never felt more support and love in my life. I'd prefer my old life back, but in the midst of all this yuck, I feel blessed and so very grateful to see each new day with all this love surrounding me. Thank you! In 2017, I hope to find the perfect match to conquering these little f'ers, and living each moment how it was meant to be lived, with gratitude, hope and most of all love. I'm also going to continue to do my best to embrace this uncertainty of life.

I wish those struggling with their lives and current situations enough love and courage to know they will conquer and something good will eventually come out of the yuck they are experiencing.
Happy and blessed new year to all. Xo 

Saturday, December 24, 2016

Focus on the blessings

      Wowzers, it's been well over a month since my last post. Let me apologize to those of you who rely on it for updates. Yikes!  I'm still here, doing ok. If you would have told me I'd still be functioning 1 1/2 years after my Metastatic diagnosis, I probably wouldn't have believed you. I'm a different person, but taking things one moment at a time has helped me to have more good days than bad. 

It been 5 Christmas's since I found that first lump that would change my life. Things would certainly be easier without this yuck, but here we are, chugging right along, one moment at a time, through all the ups and downs. 

For this post I will focus on what I have received from the yuck, instead of what I have lost. 

Blessings beyond my comprehension are still occurring on a daily basis, including cards, texts, gifts, and simple gestures.

I now have children who show more compassion and help out their momma in need. E will be sure to help me out of the car, guide me on rough terrain and carry my bags for me. Little Miss will help more in the kitchen, do her best with small chores I give her and she is a master cuddler. 

Friends go out of their way to shop, transport my children to their activities, take a walk, share meals and send sweet messages so I know they are thinking about me. 
I have family, including two caring and supportive brothers who would do anything I ask of them, along with a large extended family who continues to show they're fighting along side me and show their endless caring for me. 
Although I've had my soul sister for a long time, we are at a new level. Most times, I don't need to say a word, she knows what I need. I'm not always in the best of moods, but I try my best and she continues to encourage me, tells me I'm a fighter, sets my crazy brain straight and gives an endless amount of hugs and back rubs. Oh, and she does my laundry a lot of time, claiming it's therapeutic for her...I'm not going to argue about it. 
I have a husband who is by my side, on good and bad days, through laughs and tears. He is for sure my rock amidst this madness. 
Then there's my parents, the best there are, who spend more time with me than at their own home. As I said before, they are master givers, always putting their children and grandchildren first, before themselves. The list of things they do for me is endless: making chicken soup, taking care of the kids, picking me up from a funk, driving me to and fro, giving hugs, and knowing just what and what not to say. 

Love would be my number one! I am blessed enough to have an endless supply of it from all those who are part of my life. I am grateful beyond what I'm able to express through words. 

Christmas seems like the perfect time to Thank ALL of you who  share your love with me. I truly believe it's the strongest healer there is out there.

May this New Year bring us all continued Peace, Love, and Hope.

Much Love, Linda

"The spirit of Christmas is the spirit of love and of generosity and of goodness. It illuminates the picture window of the soul, and we look out upon the world's busy life and become more interested in people than in things."

Thomas S. Monson

P.S. And how appropriate that I wrap up this post as "It's a Wonderful Life" is ending on the T.V. Like George, I truly feel like the richest person in town.