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Marketing Prowess for the Power of Good not evil :-)

Wanted to give everyone a Team Blackburn update as well as share some information. So here it is…

My last blog post, I shared the latest setback Ed had related to his cancer…one of his tumors which was located in his spleen had ruptured requiring a five day hospital stay, a minor procedure and a lot of pain and discomfort. Coming home is always great, but there was clearly a sense of something different in the air for both of us. Neither of us could explain it. We’ve gone through adverse effects from treatments, emergent visits to the hospital, unexpected hospital stays, and the proverbial, “we are not seeing the results we had hoped for”, but something about this particular incident was just different. It was as though the gravity of the situation became very “real”. Perhaps this is switch that goes off when you go from denial to acceptance. I’m not sure, but whatever it is, it’s not a good feeling.

With reluctance, I went back to work the Monday after Ed had come home. I didn’t want to go, rather, I thought I should be home taking care of him, but he insisted. He was fine and didn’t need me to babysit him. So I went. Reluctantly. The next day, Tuesday, I came home from work, and we had a talk. Ed had decided that it was time for me to take leave from work and take care of him full time. While nothing had changed, he decided, and I agreed, that he was not recovering as quickly as he had in the past from these types of setbacks. We have no way of knowing what the future holds and for how long, and in that time, he expressed he didn’t want to be waiting for me to come home from work every day, rather, he wanted me with him, doing things we enjoy. Now, this sounds a bit hopeless as though we are giving up. That is not the case. Ed has started taking his latest treatment, an FDA approved, targeted therapy called Votrient, and we are very hopeful this will be the answer to our prayers (and all of your prayers too). We’ll have scans in a few weeks that will let us know the impact the Votrient is having on the cancer tumors, and until then, Ed and I have decided to spend some great time together doing whatever we want each and every day. This is always dependent upon how he is feeling, but there is something incredibly freeing about just waking up each day and saying, “What do you feel like doing today” and just doing it. And some days, it’s a great adventure, some days; it’s sitting in bed watching TV. It doesn’t really matter – we are together, which is what is important. This is living life one day at a time and enjoying each day as it comes.

Now for me, work was an escape. It was a place where I could go every day and actually solve problems. I can’t cure Ed’s cancer, or any other cancer, but at my “day job”, challenges are solvable and frankly, a lot easier than cancer. I imagine with most people who experience cancer, perspective comes into a much more clear focus, as it has for me over the past year. Fortunately for me, I actually enjoy what I do being a marketer. Communicating ideas, products, services, whatever, where someone understands the message and takes action. So while I am currently taking leave from my “day job”, I’ve decided how can I use my marketing prowess for the power of good? How can I help solve this world hunger we know as cancer, and in our personal situation, Synovial Sarcoma? With this, a plan is born :-)

I’ve finally taken that step and put the early marketing plans together for fundraising efforts to specifically support research and resources for Sarcoma.  I won’t bore you with the details of the plan, only to say that many of you have asked if you can help in any way. I have never had a good answer to this, and now I do. I am going to ask you for support both in time and in monetary donations. I promise to limit these requests to 4-5 over the course of the next year. I promise that the efforts will support the main objective of the overall plan which is to support research and resources for those impacted by Sarcoma. And I’m going to start small with this first fundraising effort to support the Sarcoma Foundation of America (SFA).

I’ve decided to sell a wristband that says “Cancer Sucks” (for those that are on Facebook and friends with Ed, you know this is his profile photo). While the symbolic color for Sarcoma is yellow, I have decided the multicolor wristband that represents all cancers would serve best as I would guess that everyone that reads our blog has been touched in one way, shape or form, by cancer of some kind. While the fundraising efforts for this and all proceeds will be directed to the Sarcoma Foundation of America, the wristband itself will represent whatever cancer you might have been impacted by, past, present or future.

Here’s how you can support this fundraising effort for the SFA:

  • We’ve set up a PayPal account for this effort, and using the widget at the top of the page, order directly using a PayPal account or credit card. As soon as the order comes in, I will send you the wristbands. I’m selling them directly for $5 each. I will send all proceeds directly to the SFA in Ed’s name. This is the quickes and easiest way, and my preferred method of donation as it covers the cost of the wristbands including shipping.
  • Email me at traceyb@outlook.com and let me know how many wristbands you’d like along with your mailing address. I’m selling them directly for $5 each. I will send all proceeds directly to the SFA in Ed’s name.
  • If you are interested in making a donation directly to the SFA, I will send a wristband as a thank you gift for your donation:
    • visit www.curesarcoma.org and click the link that says “Make a Donation” (Ed will also add a link to SFA on our homepage)
    • In the section that says “Select the type of donation you would like to make below” select “In Honor of Ed Blackburn”. This helps us to keep track of the total amount of donations that are coming in for our “warrior”.
    • In the Family/Friend Notification insert our mailing information as:
      • Tracey and Ed Blackburn, 4375 325th Avenue, NE Carnation, WA 98014
      • Email me at traceyb@outlook.com and confirm your donation. Please include your mailing address so I can send out the thank you wristband.

Cancer sucks! Everyone knows it and we certainly do. Every little bit of ass kicking helps! We thank you for your continued support, thoughts, prayers and donations that you make to this effort or any efforts you put towards the fight against all cancers. Let’s hope we can find a cure soon!

Strength, Courage, Wisdom – Faith, Love, Hope – it is all we need each day!

Tracey

Update from the Blackburn’s, September 16, 2012…

I’ve received a few mails from some friends who noticed that Ed and I haven’t been “around” lately and wanted to make sure everything was okay. And when I say “around” that means mostly updates to Facebook, email or IMs. Having friends all over really means we are connected with technology, and well, it can be noticeable when you are not “around”.
So here’s the update. Last week was awful. From my POV, one of the worst since the nightmare began. Here’s what happened…
On Monday night, after a dinner visit from Josh, Ed and I were just sitting around relaxing and mostly just watching TV. It was about 9PM and we were about to head upstairs to retire to the bedroom and he stretched out his left arm and caused him an unusually sharp pain. Neither of us thought anything of it until we got upstairs and the pain had now manifested into his stomach. He had just started his latest treatment drug, Votrient, so both of us thought he was probably just experiencing a side effect from it. You see, one of the main side effects from this new drug is gastrointestinal “issues” so our natural inclination was to think that was all this was. Since it was close to bedtime, he figured he’d try to “sleep it off” and see how things were in the AM. In went the Ambien, out went the lights.
About 1:30AM he nudged me saying the pain would not go away and he could not get comfortable. I offered up a Vicodin which he readily accepted. We waited about an hour and there was no relief. In fact, things seemed worse, and all he had to say was “something is wrong”. So we got dressed and headed into the ER at UW to see what was going on.
After a few hours, an X-Ray and CT scan, oh and a shift change which always adds time onto things, the ER attending came in and explained what was going on. It appeared as though one of the many tumors that Ed has was located in his spleen. This particular tumor had ruptured in his spleen. Now of course my first reaction was “ruptured spleen??? Emergency surgery? Removal of spleen? WTF???” I think the doctor was reading my mind as he was quick to reassure me that while this was serious, this was not a ruptured spleen that was causing massive internal bleeding and my husband would not be whisked away to surgery. This was a tumor in the spleen that had ruptured that in fact had caused some internal bleeding. We had time to get the right doctors in to consult on the situation to determine the right course of action. You see, when you have cancer, there are multiple teams that have to decide the right course of action regardless of the situation. The mapping of who does what and politics involved appears to be very similar in nature to what I work with every day at Microsoft, and would take several power point slides to explain thoroughly. But I digress…back to what happened.
Many hours and funny situations later, we finally have decided that the day had been long (ER at 3AM – actual private hospital room at 7PM) we’d monitor things through the night and then decide one of three courses of action that we could take including 1) continue to do nothing as long as there was no bleeding, 2) have an angioplasty type procedure done where the bleeding from the tumor in the spleen is blocked cutting off blood supply to the tumor and most of the spleen, or 3) surgically remove the spleen entirely. Each had pros and cons, which I’m sure you can all come to conclusion on yourself, and outlining them here would be much too long.
On Wednesday (yes, it’s only Wednesday at this point), I arrive at the hospital in the AM and Ed and discuss the best option and what our oncologist, Dr. Pollack recommends. My take is this…let’s take cancer out of the equation for a minute. If for some reason, Ed had some sort of bleeding coming from his spleen, what course of action would we take? Surgery was the worst case scenario, and neither of us is a “wait and see” type. Option 2 seemed the best; least invasive approach that would ensure the bleeding was stopped. So that afternoon, Ed had the procedure done. Doctors make everything sound like it’s so easy. Sure, this is a fairly non-invasive procedure, which of course will come with a fair amount of pain and discomfort, which will be managed by drugs. It’s never as simple as they make it out to be.
Ed came up from the procedure in a great deal of pain and discomfort. On top of that, he had to lie flat on his back for two hours post procedure. No one mentioned that before they took him down. They made it sound as though all would be fine, he could finally eat (he hadn’t eaten for two days at this point in case he actually did require surgery) and he would be in a much better place after the procedure. Not so much…I’ll leave the details out, but I stayed by his side the entire night making sure he had whatever he needed to make him comfortable; water, juice, crackers, or just my hand to hold. I think it was me that needed his hand actually. It was a long night. As was the next day (Thursday) where the pattern was about the same; sleep, drink, drugs, sleep, discomfort, etc. Friday morning seemed like a corner was turned as I walked into his room and he was drinking coffee and eating a pop tart  Finally, something that made sense to me; normalcy (for those that don’t know this, Ed eats pop tarts with his coffee every morning. Generally, I bring him his pop-tarts and coffee in bed every morning, and most of our friends have a laugh at this every time it comes up)
While there was still much pain and discomfort, things were finally seemingly being managed with meds, and other than being incredibly loopy, having very strange dreams, and sometimes just saying really funny things, positive progress was being made enough to know we’d go home on Saturday. We made it home in the afternoon and horizontal is where our boy has been since. Thanks goodness for football Sunday where we generally just sit around and do nothing anyway!
So that’s where we’ve been this past week; checked in at UW with yet another wrench from this cancer thrown at us. “Cancer sucks” isn’t even enough to describe this hell at this point. I’m not even sure there are adequate words.
Thanks for reading and for everyone’s continued support, thoughts and prayers. XOXO
Tracey
Strength, courage, wisdom, faith, love, hope – it’s all we need

The Picture of Health

For the past few months, I have had time off from treatments. Mainly waiting to see how the current treatments are working on the disease. During this time, my hair has grown back, I have gone back to work and have been eating very healthy choices and still no intake of refined sugar products. That being said, here is the real story.

When we got the green light from the Oncologist to enjoy life and move forward without limitations we continue to make our plans. We planned our vacation to Chicago and to Michigan. To visit family and close friends. A week before our departure, I decided to have this lump on the side of my head removed. It turns out it was Synovial Cancer and I was glad it was gone. About that time, my hair started to grow back. With the last chemo, it took a bit longer to return then the first time. I was happy to see it come back. We went on our vacation and everyone commented on how good I look. This got me thinking?>??? What does Cancer look like? We had a great time on our vacation even with my limited capabilities in and around lake water. Once we got back, we contaced the Doc and he told us it would be another three weeks before we started any form of treatment. This gave me the green light to go back to work. I have a great job and work for a great company. One of the owners is a good friend who is very well aware of my situation. He wanted me to come back to work as soon as possible becuase he needed help on a project but he was also quick to tell me that I can work as hard or as little as I feel comfortable doing and not do over do it. So, I went back to work the next day and it was a welcome opportunity. I love what I do and it keeps my mind off other things. It was tough at first. I was easily fatigued but managed to make it through the first week with about 30 hours or so. Since then I have put in my fare share of hours and taken time off as needed for health choices, appoinments and family gatherings. Hence, my little bit of time to write today. Everyon continues to comment on how good I look. Which really makes me wonder… what does Cancer look like?

From on outward appearance, my health looks good. I have lost a little bit of weight mainly from working and better diet. Though, I have not been this thin in nearly 10 years??. I feel pretty good most of the time. Intenally I battle a horrible disease that is trying really hard to take over my life. At the moment I am losing but I look good doing it. A few months ago, I was winning and looked terrible, bald, pale and weak. So, does that mean I have to be fragile and broken to win? Is that what Cancer looks like? Cancer is not what it seems, it doesnt have a face, a look or an image. Cancer is a disaese that makes us physically weak in some cases but it makes us stronger in others.

We now measure each day for what it is. Can I offer a bit of advice? When you see me, dont ask “How are you doing” ask “how are you doing today?” I will tell you either “Today is a good day!” or “I have had better days”.   Trying to explain “how I am doing” is a hard question to answer on most days but “how I am today” is mostly easy.

Today I am a picture of health and today is a good day. Thats my life today. I dont know what tomorrow will bring I only know what yesterday was and what today still can be.

Thanks for reading.

Brain MRI Results from 6-1-12

6-11-2012 0940 AM.

A week ago Friday, we had a scheduled brain MRI to determine if the blood clot is being absorbed as well as check the status of the lesions that were previously treated by gamma knife. This is kind of funny. Well, on Wednesday, I get a call from an automated message, from Denver CO. In this message they are reminding me of my MRI appointment. On Thursday, I get another call from the Radiology department, reminding me of my appointment. Both inform me that my appointment is at UWMC 2nd floor. Friday morning, I read the paperwork to find out if I have any diet restrictions, as well as time of appointment and location. Tracey and I depart in plenty of time and head out. In all the confusion, I told Tracey the address of the location and that its located on the 2nd floor. Never mentioning that the appointment was at the UWMC. Both Tracey and I are thinking its located at Harbor View Hospital, on their second floor radiology department. This is where we have previously had this done. Upon our arrival, we check in at the radiology department. Only to find out then, we are at the wrong building. Then the light bulb in my head beams really bright. It seems the person who made the appointment told Tracey it was at Harborview hospital which is part of the Cancer Care Alliance which is part of UWMC. Sound confusing? We have 20 minutes to make it to our appointment in rush hour traffic. We call ahead a let them know we are running late and why. They, of course, tell us “no problem we will work you into the schedule once you arrive.” 25 minutes later, we arrive. Just five minutes late. We check in and wait. An hour later, I am called. The MEI takes about 40 minutes from start to finish. Our Radiologist review appointment has passed but fortunately for us its in the same building.

We are called into the back of Radiology and placed into an examination room. Shortly thereafter, the LPN arrives and gives us a quick break down of the results of the MRI. It appears the blood clot is doing exactly what they expected. Its slowly getting absorbed. She asks about my vision and I explain that I have noticed improvement. She then tells us they found two more lesions on my brain. WTF?? Really? She further explains that they were probably present during the last CT scan but were not observed due to the quality of the scan. She asks if we would like to talk to the Radiologist about the results. Of course we do. She leaves and a short time later, the Doc, whom Tracey and I really like, arrives to discuss the results. He explains and tells us our options. The options are pretty much the same as last time and the risks are pretty much the same as last time. He recommends another round of Gamma Knife. We are not so thrilled about this option, considering our experience last time and the side effects. He understands and we decide to take a “wait and see” approach. I told him that “I” do not want to do anything until we get the results back from our CT Scan on July 2nd. This scan will tell us the effectiveness of the current treatment, which appears to be going well. He informs me that there is a “blood brain barrier” which prevents bad blood getting into the brain, which also prevents good white blood cells as well. There is a small possibility that our current treatment will have an effect on the lesions but only a small percentage. Well, that’s good enough for me, for now. He also explains that we have enough time to wait it out for a short amount of time. Tracey and I leave, with two thoughts running through our heads. Mine, which is “I can’t win…” Tracey’s “We are playing a game of [wack-a-mole]” Lol..

For the next couple of days, I am having trouble accepting this new diagnosis and live in a state of “funk”. After about three days, I get my second wind and realize how good I currently feel and how well the current treatment is working. Lets just hope that this current treatment will work on these brain lesions. The odds are against us but we have been pretty good at “odds” lately. The worse they are, it seems the better our chances. Sometimes even if the odds are for bad.

Over the past couple of weeks, I have been wearing a heart rate monitor to determine how strong my heart is and how fast I am getting healthier. When I first starting wearing the monitor, I was discouraged. I used to be so much stronger and this disease has taken its toll on my body. As time progressed, I realized that I am getting stronger every day. My heart rate has dropped as much as 15% in nearly two weeks. My legs feel great and my breathing has gotten so much easier.

The day we had Gamma Knife

Unexpected News

Unexpected News:

5-23-2012 08:00 AM

Monday this week, we were scheduled for our four week CT Scan. The scan was to be utilized as a marker of my current status in the modified “T” Cell trial. Originally, it was only supposed to be a basic CT scan, which I was relieved to hear. Well, we got a phone call stating the CT scan has been upgraded to a CT Scan with contrast. The difference is that a basic CT scan takes about 5 minutes with no prep work. The CT scan with contrast is a bit more detailed. You can’t eat four hours prior and only clear liquids. You also have to arrive an hour prior to your appointment, check in and drink a quart of “contrast” liquid. Which is basically distilled water with some contrast fluid. It really doesn’t taste that bad, it’s really about drinking a quart of fluid within an hour with all the digestive issues I have been experiencing. The reason the scan was changed, it turns out it was a requirement of the Trial. Seeing that I am patient one in a phase one trial, I guess I can overlook this last minute change.  :)
The following day, Tuesday, we had our weekly Clinic visit. Today, as with all weeks I have a blood draw, check in with the Oncologist and a quick view of the scans. We arrived on time and proceeded to the blood draw Clinic. Recently, I have been asking for Meghan, a particular Nurse with lots of experience accessing Power Ports. You know, that thing surgically implanted into my chest for easy access for IV’s and blood. I have had a couple “issues” with other Nurses and their experiences, so I have started asking for Meghan each time. She is a wonderful person and always nice to speak too during the process. This day is no different. I sign in, ask for Meghan and sit down. A couple minutes later, my name is called and I proceed back to a private room. This is not Meghan though. It’s someone new, I have never seen before. I ask about Meghan and see replies “Oh, the paperwork didn’t say you requested Meghan, shall I find her”. I thought about it for about half a second and told her, “No worries, it’s OK”. Meghan peeks her head in the room and says, “Sorry Mr. Blackburn, the receptionist forgot to put my name on your paperwork”. I replied, “No worries”. Meghan assures me that this Nurse is awesome. My Nurse lets me know that she has an observer today and ask if it’s OK. I reply “Sure, no worries”. (I say that a lot.) She begins to prepare for accessing my port. It’s a “real” process. Takes longer to prepare then it does to actually do the blood draw. This whole time, she is shaking like a leaf. I am beginning to get a bit worried. She asks if I need numbing medication, in which I reply. “Yes”. She prepares the Novocain, still shaking like a leaf. She goes to inject and she is shaking so bad it feels as if I am having a muscle twitch in my shoulder. To make a long story short, it turns out she was relatively new and that the observer was actually a supervisor making sure she prepares and follows proper protocol. Wow… She did a great job and I assured her many times how great a job she did.
We then proceed to the fourth floor for our weekly Oncologist visit. Dr Seth Pollack, is our Oncologist as well as the Doctor responsible for this phase one trial. So, we both have a lot at stake here. We are led back to the room, a bit early. A check of my temperature reveals 97.1 and my blood pressure is 110 over 72. Very low for me but the Nurse says its “good”. The nurse leaves the room and Tracey and I start a discussion about when the Dr. will arrive. We are about 10 minutes early at this point. We laugh and joke around for a few minutes, I then grab my iPad stating that the Dr will be a while. Tracey is hesitant to get our her laptop because she thinks as soon as she does the Dr will arrive. I assure her, he will not. We laugh about it and she gets out her laptop. The Dr. arrives about 15 minutes later. (told ya). He seems to be in a unusually good mood today. He asks how I feel and how the past week went. We talk about my visit with the Nutritionist (to be covered later) and about how I feel. I told him that this past week, on Tuesday seemed to be the worst day since the trial but each day since I have been feeling just a bit better. I also told him that I feel as if the tumors have changed or stopped growing because I was feeling better, I could breathe better and was coughing less. He states, “well, let’s look at the scans”. He seemed a bit happier than usual.  As he is bringing up the scans on the computer he tells us “we have had a good response with the larger tumor that was radiated”. Tracey and I kind of just look at each other and she asks “what does that mean?” He explains that the tumor that was radiated (the largest of the tumors that has given me the most grief, located on the back side of my right lung) has decreased in size by 20-30%. We were both in shock. This is not what any of us expected at this point. This scan was only supposed to show the current size of the tumors and that they should be a bit larger in size due to the treatment. This we were prepared for, not what we were being told. Don’t get me wrong, we were in shock, elated from the good news just unprepared. Anyways, he continues to explain that some of the other tumors have decreased in size and that only one has not changed. None of which have gotten larger. Totally unexpected, fantastic news! I look over at Tracey and she is having a hard time controlling her emotions. She is emotionally excited and happy with the news. I am just in shock. We have more discussions but realize that the real test will be the scan that is in six weeks. This will be the scan that will determine if this treatment has been a success or not. For now, we can enjoy the good news and realize whatever it is we are doing, IT IS WORKING!
CAUTION: We are not getting overly excited and neither should anyone else. If we get the same news after the scans in six weeks, we will be sure to party hard and celebrate the good news. Until then, we are cautiously optimistic. Nothing worse than to hear bad news during our clinic visits. So we have to prepare for anything.

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