For those that love us…

 
In December 1991, I was 23 years old, happily married, working at a good job and pretty much doing whatever I wanted in my free time. Traveling, skiing, hiking – it was a great life and Scott and I were having a ball. And then my Dad was diagnosed with terminal pancreatic cancer. We knew he wouldn’t have very long, that’s just the way it is by the time you get that diagnosis, already late stage and very aggressive. I have talked/blogged many times about my Dad and his dignity, acceptance, grace, and perseverance through his disease. He was always my hero and remains so to this day. He died on May 8, 1993
While he was sick, we rallied around him as a family and my brothers and I each did our best to help, but through all of what my Pop went through, my Mom was right there with him at every turn. She attended his appointments, his treatments, and helped him through the sickness and fatigue he felt after each chemo, helped him when he was so weak he couldn’t bathe himself, and was smart enough to get hospice to the house when it was time. She tried to cook anything and everything that might sound good to him only to see him throw up or have it not taste good after a bite or two. She coordinated visits from his many fireman friends, our family, and others to make sure he was never too tired, but still got to stay in touch with everyone. She really was amazing. And she did it for many months as he went through treatment, without complaint or even a second thought. So naturally, at the end, the last words I heard him speak, after many hours of silence were to her, and they were simply “I really love you.” After he passed away in our home that day in May, my Mom walked him out of the house to the coroner’s car waiting outside and didn’t come back in until the car drove off out of sight.  And that finished their journey on this earth together. And the vision of that will remain with me all of my life as a symbol of their deep and never ending love for each other.


And now, here I am some 25 years later, and I see my sweet Scott and think about all he’s already done and all he’ll have to do on my behalf. He’s always been and remains my best friend, but there’s a change that occurs when one of you is diagnosed with an incurable disease. And while I’m still doing quite well, I see the stress this brings to him and I know he’s under great pressure. I feel guilty about putting him and our boys through any of this and wish I could do something to change things. But we both keep plugging along, because, well, there is no alternative. We have kids to raise, jobs to work, and giant dogs to feed. And for right now – we’re hanging in there. But I do want everyone to know – how much I appreciate him and love him. And that I know he’s going through so much and keeps it all close to his vest because he always puts me and his kids first.


I think we all have an idea about how difficult it is to be a caretaker of someone that is chronically or terminally ill, but I don’t know that anyone can really grasp the toll it takes on the people we love and are closest to us. Disease changes the person it has infested – physically, emotionally, in how we think and feel about ourselves, and in so many other ways you don’t see coming. And our caretaker has to adjust to this new you as well. I’m so much more emotional than I used to be and so much more irritable (at least I keep telling myself that is a new quality!). Sometimes I imagine Scott must feel like he has to swallow his own feelings, pain, hurt and confusion; that it is somehow secondary to mine. But it is not at all. What he is feeling matters just as much. And it can be so easy for both of you to just shut down. But that’s the last thing we can do. Anyone in this situation has to figure out this new relationship and even to somehow embrace, or at least accept it and the changes it brings to our lives or you’ll lose each other.

I certainly don’ t have it figured out and don’t pretend too. But I did want to take the opportunity to tell Scott and my Mom, “thank you.” I know it isn’t/wasn’t easy and you both are amazing. And I’m so sorry my Mom has to find herself worrying about me now at this point in her life, but I’m in good hands.  And of course I want to send mad props out to my siblings, in-laws, friends and everyone that cares for me. I love you all!

Also, there are a few things I want you to know if I check out before Scott does:

· Don’t you dare, anyone, criticize Scott if he chooses to date and/or remarry. I totally trust him to bring home only someone good for our boys and he deserves to be happy – always. Trust me, it would have been our druthers to be together until we were both crusty old farts, if that had been our choice.  And I haven’t given up hope that will still happen!

· Do not question how Scott raises our kids. He knows what I would do, and frankly, it’s not always what he would do, but he will always put what is best for them first. NO QUESTION ABOUT IT.

· Make sure he remembers to go out and have fun. No being a fuddy-duddy! He needs to do at least one or two things a year that I would force him to do so that he remembers to be a kid every now and then. The bowling league has been a 32 week reminder of that which I know he will never forget … or forgive.

· Remind him often, of how much I love him and how thankful I am we got to share our life together. Not because he’ll forget, but because it will be nice to hear. Everyone likes to hear nice things from time to time.


 

Birthday, Bowling, Beer & Buddies!

Monday is my birthday! I’ll be 49 years old. I LOVE my birthday. I always have. Scott has always teased me that I could squeeze at least a week out of birthday celebrations each year (sometimes longer). I love everything about having a birthday. I love the cake and the party and celebrating with my family and friends. I’m hardly shy, so I guess I enjoy being the center of attention for the day too. It’s just nice to think that we take the day to celebrate being given this life. It really is the greatest gift to receive. And of course, since my Stage IV diagnosis, my birthday is especially important to me and something to celebrate. I’m thrilled to be turning 49 – because, well frankly, it beats the alternative.
  
And this year, things seem to be looking up after a long Fall/Early Winter. It’s been rough emotionally the last few months because we’ve lost so many metsters recently. I don’t know if it is more than usual, but it felt like so many. And it was really hard to have people I know dying and realize that these are folks that have shared details about their lives with me. It’s been long enough since my diagnosis (25 months) that these aren’t faceless people in a crowd to me or others just sitting in an oncologist waiting room. These are people that have, through social media and at MBC events, shared their lives with me and the MBC community. They’ve reached out to ask for prayers and help, given support to our community members when we are struggling, shared their fears and their triumphs, advocated side by side for more research funding… it really brings it home and hits hard when we lose someone. I ask that you all keep these angels and those they left behind in your thoughts and prayers.

The last couple of months of 2015 were a bit bumpy for me with regard to my health as well – but things really are starting to look up (she types hesitantly knowing that it can turn on a dime). My tumor markers skyrocketed just before Christmas, making Dr. Shazam decide I should have a CT and a bone scan STAT (yes, I’m picking up all that technical medical jargon during my office visits). I was really tired and sore too. Fortunately, however, the scan results still show my cancer as stable. It’s so weird to get mixed messages from your tests and your body. So, while my cancer is not really asleep (as I’d like), it is also not progressing significantly. And I’m definitely feeling better now. I think I may have overdone things a bit, but I was so happy that we could host Christmas again this year and have everyone come for dinner and to celebrate with us.

  
I was finally kicked out of the clinical trial for the mouthwash that was allowing me to get my Afinitor medication (at $10,000 a pop) for free. It was a good run – 12 months, but I think having to go on and off of it so many times, and reducing the dosage to the lowest amount, just wasn’t giving the trial folks what they needed for good data. I thought it might mean a change in treatment, but Dr. Shazam feels the current protocol is still working for me, so we’re staying on the same treatment for now and just dealing with the bumps of going on and off the med as needed to keep my liver enzymes in check. The Clinical Nurse did check to see if there were other trials, but evidently my bone lesions are considered too small and “immeasurable” to garner usable data for the current trials she has on her list. There’s no way I’m going to complain about that!

So, now here I am – my last year of being in my 40’s. I remember thinking that sounded so old when I was a kid. And now that I’m here, I’m not freaked out at all about getting older. I have so many wonderful things to show for myself – a great family, good job, and wonderful friends. I actually am one lucky duck. 

  
And I am looking forward to my 50’s. I plan to see all 10 years of them and then some! I don’t know – maybe I should feel bitter and scared and cheated, but the truth is… I just don’t. I feel blessed and loved and happy… I understand why people feel bitter and angry, and I would never judge them or say they don’t deserve to cope with a MBC diagnosis however they need too. It’s a roller coaster ride and it’s not for me to say how others should feel. But for me – this birthday I will celebrate by bowling with some good friends while drinking pitchers of beer. I will blow out the candles on my cake and make a Moonshot wish – because I just want more and more of this life.

Pinktober – A Summary

Thanks to all for the support bestowed upon me this month of October – Breast Cancer Awareness Month. It can be a difficult 31 days for those of us living with breast cancer. Having Metastatic Breast Cancer (MBC), can make it even more emotional and difficult as the images of survivorship and pink warriors are everywhere for the month.

To recap, I was fortunate enough to be able to tell my story of MBC to Theresa Marchetta at Channel 7 news.  Theresa is a two time thyroid cancer patient, and she understands the stress of having to undergo regular scans and the worry about progression. She took a genuine and personal interest in my story and did a great job to help me explain the urgency and importance of better funding for breast cancer research, especially around MBC. I feel fortunate to consider her a friend. Cancer patients always seem to connect due to our shared experiences.  Interview

Many in the MBC community took serious steps to bring attention to the lack of research funding for MBC.  The group, MET UP, staged a successful “die-in” in Washington, D.C. on Metastatic Breast Cancer Day – October 13th. The die in was used to highlight that the number of people that die daily in the U.S. and the world from MBC has not changed significantly since 1975 and to implore our leaders in federal government to address this issue. We still lose 40,000 people a year in the U.S. – that’s about 110 people per day. MBC funding is thought to be only about 7%, some say even less, of the breast cancer donations.  Read Forbes Article About the Die-In

The #iamsusan campaign, born this month, focuses on reminding the Susan G. Komen organization of the promise made by its founder and former CEO, Nancy Brinker, to “end breast cancer” in honor of her sister, Susan G. Komen. I find this to be a slippery slope. Komen and its supporters feel “Stepford Wife-like” in their continued and stubborn focus on “awareness” and “education.” These campaigns have come under fire in recent times as they feel empty and hollow at this point. Especially since Komen now seems to be throwing bones at MBC advocates in an effort to quiet them down. They have a campaign just for October that allows you to choose where your donation will go – including an MBC category. Why only a month set aside to choose?  That said, Komen’s influence and purse would be a huge resource for bringing better understanding, and more importantly the ability to focus more research funds on why breast cancer metastasizes and potentially find a cure after it has spread to distant parts of the body. I wish they would make a genuine effort to support MBC patients. Kelli Parker, the creator of the #iamsusan campaign, is tireless and passionate in her mission.  #iamsusan FB page

I also signed up to participate in the Metastatic Breast Cancer Project. The Project is a collaborative effort between researchers, doctors and patients focused solely on MBC. Its goal is to generate a comprehensive set of data to be shared with the entire research community so that all scientists can take part in the discoveries made possible by direct patient engagement. One cannot vehemently advocate for better research funding and then not take part in such an opportunity as this. The chance to share my personal cancer information, DNA, and stored tumor material in this project is a no-brainer.  MBCProject FB Page

And finally, thanks to my friends, Brandi and Beth, who hosted a Taco Tuesday event on October 13th. My family and friends that participated, along with those that saw the Channel 7 Interview, helped raise approximately $15,000 for METAvivor on my behalf! METAvivor is dedicated to the specific fight of women and men living with Stage 4 Metastatic Breast Cancer. At the time of METAvivor’s founding, no organization was dedicated to funding research for the disease and no patient groups were speaking out about the dearth of Stage 4 cancer research. While more and more people have taken up the cry for more Stage 4 research, METAvivor remains the sole U.S. organization dedicated to awarding annual Stage 4 breast cancer research grants.
I am simply overwhelmed by the outpouring of generosity and support.

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Which brings us to November, and the fact that I have so much to be thankful for… including all of you, my dear friends and family.  Bring on the turkey, football and pie. Gobble-Gobble!

Counting Up – Not Down

My youngest son has terrible allergies to trees, weeds, and grasses. So much so, that we are in the process of having him get weekly allergy shots. The entire process will take about 3 years, but then he should be “cured” of his allergies.
My husband and I were shaking our heads about the fact that we didn’t realize how bad his allergies were for so many years. We would always get a live Christmas tree, and it just didn’t really register that he always would get so sick each Christmas. Doh!
So, this year, my husband said, we should just get a small artificial tree – something we can use for the next couple of years until he is better. Makes sense. But in my head, came the count down.
Also, my oldest son just started high school this year and went to his first Homecoming game and dance this last weekend. He went with his buddies and they all looked so darn handsome. It really tore at my heartstrings and… of course, that also started me doing the count down.
Average median life expectancy is 3 years for someone with Metastatic Breast Cancer (MBC). I’ll be at 2 years this December. How many Christmases will I have left? How many dances, Proms, baseball games, first dates for my boys? Probably quite a few, but on average only about 22% of MBC folks live past five years. So you see, every month is breast cancer awareness month for me because every month has some special meaning or event or something that makes me think about how long I have to live.
So far, I count the blessing that the breast cancer has only spread to my bones. Keeping it out of my soft tissue organs will be a key to my longevity. But there’s very little that I can do to prevent the spread to my organs – it’s just a matter of time.
So, that’s the thing – rather than count down, I’ll concentrate on counting up… counting up the good memories and experiences, counting up the huge amount of friends and loved ones in my life, counting up all the good fortune that has and is bestowed on me daily. Instead of thinking about how long I have to live, I’ll focus on how well I need to live. Make everything count – because everything does count!
One last thing – today, September 21st, is designated as a social media take over day for MBC. Our tag line for awareness and educational materials is #beyondthebreast. Please share this link to help us “spread” the word (pun intended)!

https://livingbeyondbc.wordpress.com/2015/09/21/when-breast-cancer-awareness-is-every-month-beyond-the-breast/
#beyondthebreast
#metsmonday
#stage4needsmore

Change in the Weather

It’s Fall in Colorado. It’s a beautiful time of year here. A quick drive to the mountains and you can see the aspen trees changing color, hear the elk bugling, and feel the coolness in the evening air that makes for great sleeping. It even snowed a bit at The Maroon Bells already.  Yes – change can be beautiful and serene. It can also be heartless and chaotic.

As someone with Metastatic Breast Cancer, a/k/a Stage IV Breast Cancer, change such as elevation in tumor markers, increased pain, and higher fatigue, can all signal a change for the bad. The P-word:  Progression.  It was just July when I had my last PET scan; something we “Metsters” do about every 6 months to keep an eye on the beast inside of us. The report came back that I had improved overall, with a bit of progression, but nothing alarming. My oncologist was optimistic. Everything seemed to be going well, except for those pesky tumor markers. The CEA and the CA 27-29. Normal for the CA 27-29 is <40 and >100 signifies cancer is present. CEA is normal at <2.5. In late August, I rang in at 137.3 (CA 27-29) and 1425.6 (CEA).  That last one kicked me right in the gut!

So what did that mean? My numbers had double in just 2 months. The docs will always tell you that these markers are just one of many indicators about how you are doing. How do you feel, are you sleeping, normal activities, your last scan, it’s all a story to be pieced together. And how did I feel? Well, now I was stressed out and not sleeping… and all of a sudden my back seemed to hurt. Were these psychosomatic symptoms? Am I a terminally ill hypochondriac? WTF?

My oncologist wanted more scans ASAP – a CT Scan and a Bone Scan. Ugh. Was change here? If so, it surely wouldn’t be for the good. Time to batten down the hatches and prepare for the upcoming shit storm.

And then, the skies cleared. Both scan reports were okay. I’m holding my own – no soft tissue involvement and some improvement and slight progression in different areas of my bones, but we’ll call that “stable.” Hold the course – that’s what the doc said. Am I relieved?  Of course, I mean mostly… but still keeping my eye on the skies and my finger in the air… after all, it’s just like the weather in Colorado.

Why Komen Makes Us “Krazy”

For most of us Metsters, we have either a tolerate-hate or hate-hate relationship with Komen. Here’s why Komen makes it hard to support their efforts.

From a recent FB post by Komen:

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When some Metsters took offense, comments were made to “quit being so dam bitter…”

Here is my response:

In an effort to help understand some of the negative reactions to this post, I implore you to read the MBCAlliance Metastatic Breast Cancer Landscape Analysis: Research Report October 2014. For those of us diagnosed with Stage IV Metastatic Breast Cancer (MBC), there is no cure. MBC is the cancer that kills. 40,000 men and women will die in the U.S again this year from MBC. The median survival after an MBC diagnosis is 3 years. That survival rate has not increased meaningfully in more than 20 years. So, if you wonder why these types of campaigns can be insulting to us, frankly, it’s because we are DYING. And, only 7% of the total breast cancer funding is spent towards MBC research. Obviously, all support to those diagnosed with breast cancer is appreciated, but let’s implore Komen and other BC organizations to spend money to CURE breast cancer and not minimize its impact with inane images. http://www.avonfoundation.org/assets/images/2014/mbca_full-report.pdf

Other stupid and offensive campaigns by Komen have included:

“Doing Our Bit For The Cure”

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Yes, fracking and breast cancer go hand-in-hand!  But likely not for the reasons Komen was trying to present.  I’m sure this really “upped” awareness.

And let’s not forget the Komen partnership with KFC a few years back.  Because shitty nutrition helps prevent breast cancer!

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C’mon Komen!  You’ve successfully helped raise awareness about getting a mammogram, self-exams, and convinced many to eat spoonfuls of the rBGH hormone ridden yogurt so we could mail in the lids – now can we aim at actually CURING breast cancer?

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*rBGH is a genetically engineered artificial hormone injected into dairy cows to make them produce more milk. Despite opposition from scientists, farmers and consumers, the US currently allows dairy cows to be injected with recombinant bovine growth hormone (rBGH), also known as recombinant bovine somatotropin (rBST).

Gooooood Morning Vietnam… OK, maybe not!

I doubt I’ll have much of a broadcast career in my future, but I am happy to share my story on the Melanie Young radio show this coming Monday, August 17th, at 2pm (MT).

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ABOUT THE SHOW: Fearless Fabulous You! airs live Mondays, 4 p.m. EST on W4WN Radio – The Women 4 Women Radio Network and on demand at http://www.iHeart.com under Shows & Personalities. Host and Health Coach Melanie Young, author of Fearless Fabulous You! and Getting Things Off My Chest, interviews inspiring women and experts health, wellness and nutrition and careers.
Show Date: Monday, August 17, 2015 4pmEST
Name of Guest: Jean Sachs, Living Beyond Breast Cancer, Peggy Valdez Olivas, Jean Burns
Focus: LBBC’s mission and education and support plus addressing 1-2 issues for anyone living with breast cancer or caring for someone who is living with breast cancer.
Here’s how to listen, or you can download and listen later:
Listen Live: http://www.W4WN.com
Listen on iHeart on Demand any time after the show is loaded (usually about 3 days later): http://www.iheart.com/show/209-Fearless-Fabulous-You
Keep your fingers crossed for me!

Positive Ju-Ju Brings Good News!

Scan results are in – they show a marked improvement in my bone lesions, with the exception of some slight uptake in my iliac area (hip). Overall – great news! In fact, the cancer in my T3 on my spine is considered “resolved” at this point.  We are sticking with the A/A treatment. I can’t begin to express my gratitude for all the support, prayers and positive ju-ju sent my way!!