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
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.

Disease progression

Usually I create these posts with MS word, edit, spell check then copy/paste. This seems to add time and effort and they just dont get done regularly. So, I am going to try something new, something quicker and easier. So, excuse in grammer issues, just want to get the updates out more quickly with less excuses.

Last week was a big week. We had both body and head scans completed. Lets start with the body scans. The CT Scan showed that the disease continues to progress. All tumors essentially have shown small signs of growth including the larger tumor in the chest that seemed to respond so well to the “T” Cell treatment. Now that, that is out of the way the head scan showed a bit better result. All in all, we have treated eleven growths in my brain with Gamma Knife, all eleven show signs of decreased activity or disappeared all together. This last scan did find ONE more lession that we have to watch closely over the next couple of months.

Ok, lets back up a bit. About a month ago, we were suppose to have an appointment with our Oncologist to discuss our next course of treatment. We had some time off, I went back to work and all seemed pretty good. A day before the appointment, his office called and told us we needed to reschedule the appointment for the following week. So we did. Now we wait…. The day prior to the appointment the Oncologist calls me and asks how I am doing. At the time, I had been expereincing some unusual pains in areas I was told there was tumors so I expressed my concernse. He acknolowdeged those concerns and told me that he needed to reschedule my appointment another week. He further told me that there was a problem with the trial and he needed more time to consider our treatment options. He couldnt tell me much more just that he needed another week. So, we did and we waited. This puts us into two weeks ago when we had our scans. I already told you about the scans so lets skip on ahead a bit. At this more recent meeting with our Oncologist, he informs us that the Trial (Modified “T” Cell trial) is on hold. Patient number two had not done so well while under treatment. I wont go into any details because I really dont have much but I do know it was severe enough that the Trial processes have to be reviewed and rewritten. For now, its off the table! He informed us that it could be a month or so before its an option again. Until then, there is a recent drug approved by the FDA that has shown pretty good success for Sarcomas. This is Pazopanib or Votrient. He wants to get me started on this right away, hopefully to stop the disease progression long enough to get his trial back on track.

We have a lot to think about. Pazopanib does have its risks just like any other drug. Its basically a targeted therapy. I have do do some research and figure out what is best. It seems I dont have much of a choice for now.

The Next Round

July 31, 2012 14:45 Hrs (2:45 PM)

(NOTE) This post was originally created on July 31st and never posted.   Actual post date was Sept 4th 2012)

Just a quick update. Today we had our meeting with our Oncologist, Dr Pollack as well as a PFT (Pulminary Function Test). First off, was the PFT. Interesting test. I won’t go into the details it would take to long to explain. The end result showed that my lung capacity is around 68% of what it probably was prior to being diagnosed. This is in part due to the radiation treatments as well as the current status of the disease. The good news is that my lungs are still working very well and shows no reason for concern at this point. Next, met with the Oncologist. We discussed what’s next as well as my current state of health. Three days post Gamma Knife and so far so good. No side effects but still a bit of swelling around the pin sights. 26 days post surgery and the wound site is healing nicely. My hair is growing back now so for the most part it covers the scar. I refer to it as my “battle scar” as most Cancer patients do when they have some part of the disease removed. 14 weeks post “T” Cell Immune therapy. Though we have had good response is some areas, others we have not. This is the mixed results we blogged about previously. We will have another scan in the coming weeks to see how and if the disease continues to progress. We have a very lengthy discussion about treatments, current health, lung capacity and disease progression. Not a fun conversation but I needed to get it out there and understand better and in more detail what the hell is going on, why and what we are going to do about it. Not that I wasn’t already aware, just wanted to be “clear” where we stood and what was going to happen next. We have elected and agree with the Oncologist about our next course of treatment.

Round two of Gamma Knife

July 30, 2012 08:00 AM

This past Friday we had round two of Gamma Knife.  We were supposed to have it done on Thursday but due to scheduling errors, it was moved to Friday.  The whole process is not very exciting and is quite daunting.

We arrived on schedule around 06:25 AM and were “buzzed” into the Gamma Knife center at Harbor View Hospital in Seattle.  Upon our arrival, we were greeted with warm and fuzzy smiles and kind salutations.  (ok, my way of keeping things fun).  The process starts out with a brief description of the day’s event and processes.  Normally, Gamma Knife is not done on Friday’s but this week me and one other is scheduled for the day.  I am patient one today.  Last time I had this done, the Neuro Surgeon who placed the halo was not very considerate nor did he have any bedside manners.  At least in my case.  So, this time we requested someone else place the halo.  Hence the scheduling issues.  After some minor preparation the Nurse gives me some relaxation medication.  Something to calm the nerves a bit.  The Neuro Surgeon comes into the room and introduces himself, something the last surgeon did not do.  He seems to be a gentler man and a bit more experienced.  The place a template halo over my head and define the pin site locations for the halo.  They inject those areas with pain killers, which hurt like a ..!!!!! The Doc leaves the room to give the injections time to numb up the pin sites.  A few minutes later, he returns and they place this halo over my head.  It takes two people to place this device, one to hold it steady as the other “screws” down the pins into my skull.  Ugh!  The pressure is uncomfortable to say the least.  Once the halo is installed, they wheel me out to get a pre-MRI so that they can map out the lesion/s.  Today, we are after three that surfaced over the past couple of months.  Upon  my return, we are placed back into the waiting room and await the Radio Oncologists results of the MRI as well as plan out the course of treatment by mapping out the lesions on the brain.  Not more than about 20 minutes later, the Doc enters the room and tells us they have found two additional lesions to the original three.  Now we are up to five total.  The largest lesion which rests in the right rear side of the brain sits near the speech area of the brain as well as the “personality” sector.  He tells us of the risks as well as our options.  Things are getting pretty scary right now.  The size of the larger lesion we found a month ago has increased significantly and is now causing edema in the brain.  Small area of swelling around the lesion.  No time to wait, our options are open but we move forward with the scheduled gamma knife treatment.   He tells us the total time of the treatment will be 82 minutes, 85 with bed travel.  They move me into the gamma knife room and “snap” my halo into place immobilizing my head.  It is now suspended about 3 inches off the table.  I have to lie still for 82 minutes.  Not like I am going anywhere any ways.  They offer up some more relaxation medication, which I quickly agree.  I have brought my iPod with a few hours of selected music just for this process.  Tracey gives it to the nurse and I start plotting out how many songs will have to play before this is all done.  It’s easier to counts songs then sit and wonder how much time has passed.  It worked pretty well the first time.  After a last minute check, the Nurse starts the music.  Get this, first song “Stairway to Heaven”.   I have to just smile, Tracey decides the song was inappropriate and changes the song.   Smiling, I drift off to lala land.  Not sure how much time elapsed, figure around 40-45 minutes before I regain mental composure.  They are treating five different lesions, according to my calculations, that’s about 5 songs per lesions.  I have been out about  for some time so I calculate that three lesions have been treated and I am on lesion four.  A few seconds later, the table moves, signifying  a change of position which means a change in which lesion is going to be treated.  I surely think this is lesion number four, just 10 songs to go and I am done.  Then comes the song by Queen, Rhapsody.  This throws everything off.  I think this song is 12 minutes long….Ok, a quick recalculation in my head, if this song is 12 minutes, then I have only two more songs after this and the table moves again.   I was close.  About two and half songs later, the table moves again.  I am thinking, “Great, last one”.  Each time the table moves, I recite the alphabet, state my birthdate and wedding anniversary date.  This is so that I know if my speech center has been affected.  The Doc doesn’t ask me to do this, I just do it… why because I am scared and worried.  After five songs, the table moves again, I am thinking “it’s all done, great”.  NOPE!  My few minutes of loss of conciseness really through off my time table.  One last lesion to treat.  I count songs and four and half songs later you hear the three ding chime signifying it’s done.  I quickly say the alphabet, my birthdate and wedding anniversary date. Yep, all is still ok. The Doc and Nurses come into the room and unsnap me from the machine.  They escort me back to the clinic privacy room where Tracey is sitting there waiting.  Still a bit groggy, I greet Tracey with a smile and tell here all went well.  A short time later, the Nurse returns to the room along with another Nurse to remove the halo.  One steadies the device as the other slowly backs out the screws.  Holy Crap, this hurts worse than when it was put on.  The release of pressure on the skull actually feels as if they are tightening the screws down harder!  It’s all done in less than a minute and I am glad that thing is finally off my head.  The nurses dress the pin sight wounds and offer up some pain medications.  I deny the heavy stuff but agree to take some Tylenol.  If something goes wrong, like last time, I want to be able to feel it not be medicated until after it happens.  Within an hour, we are in the car heading home.  So far so good.

After arriving home, all I want to do is just not move.  Still worried that a vessel my burst in my head, I just want to sit still and do nothing.  Later that day, I get an email from my Oncologist asking how things went.  I reply “so far so good”.  I spend much of the afternoon doing nothing and occasionally opening up my iPad to place words with friends.

The weekend passes and still no headaches.  This would be a sure sign of brain swelling and this is my greatest worry.  It’s now Monday morning and so far so good!   Tomorrow I have an appointment with my Oncologist to discuss our next course of treatment.  In four weeks, I will have another brain MRI to determine how successful this past gamma knife procedure was.

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