The New Normal…

It’s been quite some time since I’ve written a blog as it’s been hard to figure out what to really write about. We, and when I say “we” I am talking about Ed and I, started this blog to keep everyone up to date on his battle with sarcoma. That was the purpose. Well, as we all know, his battle is over. So do I end the blog especially since it’s no longer “we”? Or how does it evolve and serve a different purpose, along with the entire “Team Blackburn” website, Facebook community etc.?

I’ve written a few things to keep people informed about how Jenn, Josh and I have been doing, but I just can’t imagine writing to everyone letting them know about how we are all dealing with our grief of not having Ed here any longer. Many keep up with the goings on of the PNW Blackburn’s mostly by Facebook posts, emails, phone calls and the occasional Skype happy hour (my personal favorite). It’s in these vehicles that I can share my feelings one on one, share my tears and laughter, and I appreciate all of you that have been on the receiving end of those conversations. They are never easy for either of us, but as true friends and family, you have been there. And I am thankful.

So here we are on October 3, 2013. It has been eight months since Ed has passed. Eight months to the day. It’s hard to believe, and really the biggest indicator that the time has passed is the changing of the seasons. I had this notion that I was going to get through the summer with all kinds of projects and goals, that many of you have seemingly “been with me” in enduring. The biggest was of course was my quest to skipper my boat with the ultimate goal of scattering Ed’s ashes out in the waters surrounding San Juan Island. I wouldn’t say my boating skill building went exactly as I had expected but I did it. I managed to successfully, and with some level of confidence, tow the boat with the truck, skipper the San Juans and lay Ed’s ashes to rest exactly where he requested.

In addition and on a more day-to-day pace, many of you have kept up to date on my new lawn mowing expertise and the love of new lawn grooming toys (my next purchase on the docket is a powerful leaf blower), my scooping up and disposing of dead creatures in my yard, and the ever so famous HUGE spider in my garage that I had to call my neighbor to kill (I just don’t do spiders). And finally, let’s not forget the bird getting inside of my chimney stack and then fireplace. Not my biggest moment of strength as I “called the people” to come help, as even I realize my limitations.

And the most recent thing that happened was last weekend during the torrential rains. Turns out my gutters need to be cleaned, something I was aware of but had not yet scheduled. Well unfortunately, two of my gutters were majorly clogged so much so that rain was pouring off of my roof, creating a pool of water in an area near vents to my crawl space and inevitably letting water into the crawl. Not a good situation. One of the gutters I could reach. There I was on a ladder, with gloves on, scooping out leaves and crap from the gutter. The other one was one that I just couldn’t get to without help and thankfully; one of my friends came over and took care of it for me.

I was telling a friend of mine about this whole gutter situation which lead to talking about how I hate when this kind of thing happens. Ed took care of all of these things related to the house. I never took it for granted, but at the same time, it is always such a reminder of not only how hard some of this stuff can be, but that he is just not here. And he’s never coming back. As much as I half expect him to just walk through the door with his familiar “hey babe”, it’s just not going to happen. And I know this. I hate it, but I know it and I accept it. I’ve never been in denial about his being gone. I watched it happen. The entire 18 months of his illness to his very last breath.

And people say time helps. It does. And with the change of seasons, I have become acutely aware of the change as well as my own changes; my “new normal”. You see, as much as everyone thinks my going back to work and/or getting back to some sort of routine that I used to keep, will have things start getting back to normal, there is nothing about my “old life” that I can do today that is “normal”. Because in what version of my old life was scooping shit out of gutters, shoveling dead critters, mowing lawns, killing spiders, fixing fences, driving a Chevy pick-up truck, towing a boat, skippering a boat, packing a gun etc. EVER normal? It wasn’t. This was not my life and there is nothing that I did in my past that will ever be normal again. Not even writing and sharing my thoughts in this blog. Oh and btw – I was pretty happy with my old life and what I considered “normal”. I didn’t ask for this “new life” and “new normal”.

So what is this “new life”, “new normal”, and what is this blog now? I can think of a few things I do want it to be:

1)      Do –honor Ed and keep his memory alive, as well as create his legacy.

2)      Do – live intentionally and with purpose. Still working on this, and right now, getting through each day is the best I can do, but I know there is some purpose for me. Probably related to number 1.

3)      Do – continue to drive sarcoma awareness. NOT just cancer – SARCOMA. And end this disease. Probably related to items 1-2.

4)      Do – inspire. Not sure what to inspire, but I want to use mine and my families experience to inspire others. See items 1-3 :-)

So that’s it for now, but there’s more to come. While Ed is no longer with us, I am still here. Josh and Jenn are still here. Skip and Zena are here :-) It is my job to continue leading this family and Team Blackburn. While we are no longer “fighting” if you are reading, then you are still here. Living. That’s a great starting place for the “new normal”.

Strength, Courage, Wisdom. Faith, Love and Hope. It’s all I need to get through every day.



A Week in Review…Let’s Discuss…

This week Angelina Jolie came out with her big news about having a radical mastectomy as a preventative for breast cancer. The knowledge that she has as a carrier of the BRCA gene and her mother’s history of ovarian cancer, puts her in a higher risk category of getting breast cancer. So she took the information she had and made a personal choice to have this procedure. There has been much media coverage on this, and I have more emails in my inbox from every medical journal and newsletter to which I subscribe with articles expressing opinions on her choice both to have the procedure(s) done as well as coming out publicly to discuss it. The press cycle has died down mostly, but let’s discuss…

I had lunch with a friend this week, and I asked what she thought about Angelina’s big news. Her response, in my opinion, was right on. She said “It has people talking, which raises awareness, which is good”. I couldn’t agree more. Because if we think about it, at one time, not too long ago, breast cancer was a “rare woman’s disease”. Until people like the one’s featured in a USA Today Photo Gallery this week, as well as Nancy Brinker, sister of Susan Komen and founder of the Susan G. Komen Foundation, and now a very public Angelina Jolie, talked about it, people didn’t discuss this “rare women’s disease”. Now it’s all we are talking about…this week.

If I put this into sarcoma terms, I think about the similarities of the situation. No one really talks about this rare disease unless you know about it personally. And if you are reading this blog post, you do know about sarcoma personally. You know Ed. You know me. And maybe you even knew Sadie. And we know sarcoma. So let’s start talking about it. It’s very easy and here’s how. In the event you are talking about Ed, myself, my kids or any Blackburn and the question about how Ed died comes up (and it will), the response can’t be “he had a rare cancer”. Talk about “it” and the “it” is sarcoma. Please don’t describe it as just another cancer because we, as a people, have become so desensitized to the evil that cancer is, we blow right past it. Who doesn’t know someone that has been impacted by cancer of some kind these days? But sarcoma, that is different. It is rare. It is unknown, but we can change that. I will change that, but I need your help, and it’s as easy as what I mention above. You’ve all asked how you can help, and here’s how. When talking about Ed’s SARCOMA type of cancer, please use the word SARCOMA. Not just cancer, not just rare cancer, but SARCOMA. And then the words “rare cancer” can follow. As can that he had one of 50 different sub-types of sarcoma called Synovial Sarcoma. And if you want a more detailed “elevator pitch” that gives more statistics about sarcoma, I can provide that, or just visit our Facebook page at Team Blackburn – Fighting Against Sarcoma. In the meantime, I’ll put my useless knowledge of pop culture out there with some other very public, yet “quiet” examples of sarcoma that I am guessing most of us have heard of, but have not even realized to discuss:

• Sarcoma seems to get glamorized in Hollywood in such movies as Flight (the scene in the “smoking stairwell”), 50/50 (a true story based in Seattle), and Grey’s Anatomy/Private Practice (the mom of Cooper’s son). These are only the ones that I have seen and/or noticed, but there could be others. It is this because sarcoma is such a rare diseases that no one will remember it anyway? Let’s discuss…
• I just went to to bring up a story that I had read about not too long ago regarding a high school girl, Katelyn Norman, who had osteosarcoma aka bone cancer, and had one wish to be able to attend her senior prom. Her high school brought prom to her, at her hospital bedside where should could fulfill one of her “bucket list” items. The next day she passed away. Let’s discuss…
• On March 5, 2013, Hugo Chavez passed away from cancer, and the media coverage focused on who he was as a leader, and not the cancer he died from. The type of cancer had not been mentioned in any coverage I had seen and I found it odd. Usually, the cancer that is the culprit gets full attribution on news coverage, giving a shining spotlight that it so much wants. I became curious as to what kind of cancer Hugo Chavez caused his death. So I did a quick Bing search to see what I could find and to my surprise, the cancer plaguing Hugo Chavez had never been revealed. For whatever reason, he, his family and his spokespeople kept this a huge secret. I cannot imagine why, however, that is everyone’s individual right. Not everyone is like me and wants to scream from the rooftops to let everyone know and raise awareness for the greater good. Reading as much as I could in the news coverage, things sounded eerily familiar; pelvic tumor, chemo, radiation, surgery – the general story that one hears of most cancers, until I added a few other things; unexpected bleeding episodes, cancer returning to the surgical site, spread to the lungs, and finally, his last hours were spent in acute respiratory distress, all in the timeframe of two years. Now I am not a doctor, but I am confident in one thing. I am an expert on sarcoma and guess what – this has all the likings of it. And further reading of news articles that got past the political implications of Hugo Chavez and delved into his health and cancer had doctors speculating just as I have. His cancer shows signs of both prostate and colon; however, there are enough idiosyncrasies of both that also have medical experts pointing to the potential of his cancer being sarcoma. Again, I am no doctor, but to a degree and expert, and I am telling you, in my opinion, this is what he had. Let’s discuss…

And that’s the week in review…let’s discuss…

What would Ed say???

Let me start by saying thank you all for the outpouring of love, support, thoughts, prayers, warmth, compassion and tributes to Ed since he passed, and especially today, what would have been his 49th birthday. I am convinced these sentiments you all share are Novocain for the soul and help to keep things a little numb, which right now is not a bad thing. These kind words sent via email, text, Facebook posts and phone calls are what has continued to get us through the 18 months of Ed’s fight with Sarcoma and the past 53 days since he has passed (Josh posted this number on Facebook today in a lovely tribute he posted for his dad).

53 days. Hard to believe it’s been that long; almost two months. I had no idea how we were going to do it, but we have all come a long way in that short amount of time. We’ve moved from a catatonic state to functioning on a daily basis, and even smiling sometimes along the way. Josh and Jenn are both back at work and moving along. Skip and Zena continue to get their daily Kongs with cookies, their long morning walks, and now that the weather is turning for the better, lots of good outside time in the yard. And as for me, I occupy myself with “stuff” that needs to get done. I’ve been doing a lot of writing but not sharing as there are just some things I am not ready to share just yet. Ed always wanted me to write a book about all of this and well maybe someday my writings will be the fodder I use. Until then, we get through the days with each getting a little easier. Kind of like the time change a few weeks ago, there is one more minute of light each day. We all still mourn deeply. There are still tears, as there always will be. We will never stop missing him or hurting over him being gone. And in our continued lives, we will honor him each and every day as best we can and in particular today.

On this day that would have been Ed’s 49th birthday, we could all be sad. Paralyzed in a sense and acting in sorrow. But I have to ask – what would Ed say about this? I ask myself this question on most days, and this I know for certain; he would not want us to be sad. He would not want us to mourn his death, rather celebrate his life. These are his words from before he passed, “I do not want anyone mourning my death. I want them celebrating my life”. So how do we do this in a period of such sadness which on most days can be overwhelming?

Often on days where I am too sad and feel “paralyzed”, I reflect upon a time when Ed was in inpatient rehab post brain bleed. It was some of his unhappiest times as he was so devastated by his mobility loss. A brain bleed with this type of mobility impact was the one thing he dreaded happening most, and it had happened. I have said it before, and I’ll say it again; Cancer took Ed’s life but treatment is what killed him, chipping away at his soul. And these mobility issues as a result of the brain bleed was probably the last chip his soul could take.

It was late in the day on a Sunday, and the kids were on their way to the hospital for a visit. On most days, the later in the day it got, the worse his pain and spirits were and today was no different. He was depressed and tired and asked me to call the kids and tell them it was too late to come and he was not up for a visit. They understood and although they were only a short distance away, they did not come. Ed sat there, depressed and sad and all of a sudden he looked at me and said, “Nope. Not doing this. Let’s go for a walk”. So I said okay and got him prepared for a walk around the hospital floor. Keep in mind; it was not as simple as just going for a walk. We had to put what is called a “gait belt” around him so that in the event he lost his balance, I had the ability to “catch” him from falling. Something neither of us enjoyed or felt good about, particularly Ed, as this was never supposed to be my job. His walking was still a little unsteady but we got up, got the gait belt on and walked. And his whole attitude changed. His perseverance and determination to NOT let this physical mobility and other issues bring him down was clear – this would not beat him. Physically, he might not have had many choices, but mentally he would not allow this to take over. He had a choice on whether or not he was going to be depressed and immobile or be positive, and in true Ed form, Positive Mental Attitude or PMA was all he needed to get him through. The choice was his and he made it. And his whole attitude changed. He was sorry he told the kids to turn around as in a short time; he felt 200% better and would have enjoyed the visit. They came another day.

My point on sharing this story is that when I am feeling down or “paralyzed”, I ask myself, “What would Ed say”? And what would he do? And I think about this moment of many moments of defeat that this damn disease brought to him, and I say look at what he did. He never gave up. He made a choice in that moment of darkness to not get under the covers and give into this demon. Instead, he got up, fought it away and chose to be positive and see the light. And for us now, in this time of darkness and sorrow, we have a choice. We always have a choice. We can choose to mourn the darkness of his death or we can choose to celebrate the light of his life. And when making that choice every day, and trust me, there are days when I am wanting to hide under the covers in darkness, I ask myself, “What would Ed say and do”? And I hear a little voice that is very deep say, “Get your ass out of bed right this second and don’t even think for a minute this is acceptable”. And I smile because I know he is right. He is here with me helping me get through. And he will always be here giving me that push to make the right choice every day.

Everyone is entitled to their feelings of sorrow without judgment. And it is healthy, even necessary to mourn. Take the time to do this in whatever way is needed. But the next time you think of Ed and are sad, ask yourself, “What would Ed say”? You will not be able to not smile with the thoughts that come to mind about him. And with this in mind, I wanted to share something that was sent to me via email today from a very good friend; Hang on to those warm and wonderful memories and don’t give sadness the time of day.

Happy 49th birthday to the love of my life. I miss you so much every single second of every single day. I still do not know how to do life without you, but I am choosing to see the light you would want me to see every day.

Strength, Courage, Wisdom…Faith, Love, and Hope


Heading into February…

I wanted to give everyone  a quick update on Ed as I know I haven’t updated the blog since earlier this month. This past Monday evening/Tuesday morning, Ed started to have an increase in difficulty in breathing. The hospice nurse was out Tuesday morning and helped to explain what we can do to first and foremost, help the ease of his breathing and second, manage the pain he was experiencing from so much coughing. This included some extended use of some of the drugs he is currently taking, as well as putting him on oxygen full time. Since her visit he has been resting comfortably as both the combination of drugs and the oxygen help tremendously.

So the good news is he is comfortable, the bad news of course is this is not a good change of events. He seems to know this and is more at peace with things. He is accepting of taking the medications, which he prior this “respiratory crisis” (we’ve experienced pain crisis, nausea crisis, and now respiratory crisis) he was not rather only taking the true required drugs. I believe he has little fight left in him, although I do think he feels as though he does have months left. Maybe not several months, but not days that is for sure. He is not fighting but he has not given up.

We have finally started on the addition of the master bedroom/bathroom suite on the first floor, and I firmly believe this is motivating him to not give up; maybe not fight, but not give up. While he can’t do any of the work, he is hopeful that he will see the finished product and have some time to be in a comfortable space on the first floor of our home. As you can imagine, the stairs are quite challenging so for now, he is only able to be in bed in our upstairs master bedroom. Up until Monday’s incident, he was able to go up and down the stairs, however, it was increasingly becoming difficult.

I’ll try to keep everyone informed of changes good or bad. Often times from day to day things are status quo with nothing to share – kind of a “no news is good news” kind of thing.

Thanks for the continued thoughts and prayers. XOXOXO

2013 – What lies ahead??

Thought it was time to do an update and let everyone know where things stand as I know we have been somewhat “dark” the past few weeks, if not entire month of December. Let me start by saying continued thanks for all of the encouraging emails, text messages, Facebook posts, phone calls and voice mail messages. I know I have been remise in not responding as most days, I just don’t have the energy. But do know that Ed and I read and/or listen to every message and continue to appreciate the encouragement, thoughts and prayers that are being sent our way. The holiday season was particularly difficult this time around, and your thoughts and warmth are what helped get us through the days.

When I last blogged, things were certainly on a steady decline and immediately after I posted the blog, things actually got acutely worse. We experienced what I now know is a “pain crisis” where Ed was in a tremendous amount of pain that we could not get under control with his then current dosing of medications. It was a horrendous thing to see him go through and frankly, we both thought, and maybe even hoped, things were coming to an end.  In the following weeks, we worked on keeping the pain under control, experienced a “nausea crisis” which we worked to get under control, all the while Ed slept an incredible amount, ate very little, and lost a tremendous amount of weight.

We had to postpone the radiation treatment that I had last written about as Ed could not get out of bed to go to the hospital. Once we cleared the “pain crisis” he was able, barely, but he saw it as a means to an end. Get out of bed, get the radiation, and with any luck some of the pain would be alleviated. It was a hard trip. He was incredibly weak. I had to wheelchair him everywhere in the hospital and up his pain meds to keep him comfortable. I never thought in my wildest dreams (or nightmares) that my husband, my strong, brilliant, handsome husband would ever physically and emotionally need me so much for even the basic of things, a list I will not include here. We spoke with the doctor after the treatment and asked him very frankly – “how much time do we have”? His response, “Do you really want to know”? It’s a double edged sword with this one, but sometimes dealing with some certainties is easier than the not knowing and with our acknowledgement that yes, in fact we were ready to hear the worst, he responded. “We can never be certain with these types of things, but I would say not past the first of the year”.  I don’t think either of us were surprised by this, but had hoped to hear something different. Now that we had this information, we really didn’t know what to do with it.

So we went home and just continued on our days as we had taking one day at a time trying to adjust to a “new normal” on a daily basis. We didn’t know what each day would bring, but usually it was filled with darkness. Dark rooms for sleep, dark thoughts of the future, and dark skies as the weather was about as appropriate as the mood. Seattle in December is a fairly depressive place with dark skies and tons of rain. The days were not good by any means as we all felt it; waiting for the inevitable to happen.

Christmas came and went and the day after Christmas was a particularly low point for Ed. I won’t go into the details, as it is too personal, but it was low. We stayed up late talking about a lot of different things; everything and nothing all at the same time. And the next day came, and I’m not sure what happened, but he actually had more energy. He looked stronger in a sense, and was able to get around a bit better than in days past. And he was hungry, something he hadn’t really felt in days. Friday came and he was even better, and by Saturday, he wanted to go outside for a walk and get some fresh air. Oh and I can’t forget this; our very good friend and neighbor Tim is remodeling his master bathroom to accommodate a new Jacuzzi tub for his wife. Well guess who NEEDED to get his $.02 in on that?? The one that two days prior was at his lowest was now climbing flights of stairs to give consultation on a bathroom remodel :-) It was a good day!

We continue to take one day at a time measuring each day as a good day, moderate day, so-so day or whatever words we need to describe it. We are seeing a new pattern of what normal looks like measured by pain (which has been under very good control with his current level of meds) as well as nausea, which he still experiences, but we are getting better at knowing how to treat it quickly. Since December 26, we’ve experienced mostly moderate to good days which have included fairly good eating, less sleeping, more walking, and most importantly talking, sharing and laughing. All of which, I am so incredibly thankful for each and every second of every hour of every day. There could be any number of reasons he is rebounding in a positive direction, but frankly, I don’t care why. It could be the radiation, it could be certain drugs he is taking, it could be that mentally, he is less depressed and more positive. Perhaps the power of all of your prayers and thoughts continue to lift up our family in ways that can’t be explained. I don’t know. I don’t care. He is still here. And that is all that matters. He has once again beaten the odds making it past the first of the year, and frankly, not seeming like the end is anytime near. We are both realistic in knowing he won’t get better, but for whatever reason, each day he seems better and better. We are not “waiting” for the inevitable, rather just going with what each moment brings us.

As always, thanks for “listening” :-) Until next time, peace, love, and continued hope for the future.


Tracey and Ed

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