Just want to say thanks to all those who donated and/or showed up to the fundraiser this past Saturday. I was deeply moved to see you all there and by the sheer generosity and support. I want to especially thank those who organized the event and A. I. Models (aimodels.org) for donating what they raised to my cause. Totally unexpected and incredibly kind, words cannot quite express my gratitude.
Currently, I'm awaiting news for a possible change in treatment and treatment scheduling. But as is, nothing is confirmed, so I'll wait to post details when/if it is.
Monday, September 26, 2011
Tuesday, September 6, 2011
09/06/11: Some Good News
Firstly I apologize for the delay in update, not much significant has changed in terms of my health state, which is good. Between my last post and today I've been through my second chemo cycle (08/24 - 08/26) and it went very smoothly. It was like night and day compared to my first cycle as the symptoms were way less intense and were not piled on top of the other complications (as it's been a month since I've been mostly absent of shortness of breath, coughing, and tumor related fatigue). I've had some chest pain come back, but it's been diagnosed as acid reflux and I've been given proper medication to combat it.
Most importantly, in the time between these posts, I took another CT Scan apart of my program's schedule to measure my progress.
Today, while doing some preliminary tests to start treatment again, I got the results of that scan told to me: my tumor has shrunk by about 30%! I won't go into the statistics and likelihoods on the effectiveness of chemotherapy treatment for my particular cancer, but it is a shockingly and somewhat rare good sign. It's still not small enough for surgery, and ideally, the tumor would have to move from around important arteries and great vessels for the risk factor of operation to lower, but it's definitely closer to that goal. It's also important to note that there is no guarantee on the rate at which it will shrink, if it continues, as I've gotten conflicting pathology identifying some parts of the tumor from low to high grade. But regardless, the news nearly brought tears to my eyes and I'm so very happy to be able to share it to all of my friends and family and everyone else sending their support. You all mean a lot to me and my road to recovery.
Tomorrow, Wednesday (09/07), will be my third chemo cycle, but I look forward to it as the next step in my ongoing battle.
Also, there will be a Fall Fish Festival on September 24th where part of the proceeds will be donated to fund my treatment and recovery, something that may become a burden as I progress. The flyer is attached below (click to enlarge) for more information, but if nothing else, if you can make it, I'd love to see you there!
Most importantly, in the time between these posts, I took another CT Scan apart of my program's schedule to measure my progress.
Today, while doing some preliminary tests to start treatment again, I got the results of that scan told to me: my tumor has shrunk by about 30%! I won't go into the statistics and likelihoods on the effectiveness of chemotherapy treatment for my particular cancer, but it is a shockingly and somewhat rare good sign. It's still not small enough for surgery, and ideally, the tumor would have to move from around important arteries and great vessels for the risk factor of operation to lower, but it's definitely closer to that goal. It's also important to note that there is no guarantee on the rate at which it will shrink, if it continues, as I've gotten conflicting pathology identifying some parts of the tumor from low to high grade. But regardless, the news nearly brought tears to my eyes and I'm so very happy to be able to share it to all of my friends and family and everyone else sending their support. You all mean a lot to me and my road to recovery.
Tomorrow, Wednesday (09/07), will be my third chemo cycle, but I look forward to it as the next step in my ongoing battle.
Also, there will be a Fall Fish Festival on September 24th where part of the proceeds will be donated to fund my treatment and recovery, something that may become a burden as I progress. The flyer is attached below (click to enlarge) for more information, but if nothing else, if you can make it, I'd love to see you there!
Tuesday, August 9, 2011
08/09/11: Worse Before Better
Been a rollercoaster of health for the last week. After my first chemo cycle, although I had felt great initially, new symptoms from chemo (extreme constant nausea) started collecting with my old symptoms (coughing, shortness of breath, fatigue) getting worse. Last Sunday (07/31) I couldn't lie down without coughing uncontrollably without stopping until I sat back up. Also as the day progressed my breathing became extremely difficult, to the point where at certain moments it was like I was suffocating between strategic breaths. That night and Monday night I had to sleep sitting up in a chair, but really, not much sleep actually happened.
Tuesday (08/02) afternoon, alongside the two nights of lack of sleep compounded, I felt particularly fatigued that no amount of sleep would seem to satisfy. Before lunch I started a coughing spell that ended in me vomiting just bile, a stipulation that my doctor said warranted a trip to the hospital, and that's exactly where my Mom knew to take me.
We returned to the Santa Monica UCLA Medical Center Emergency Room where they took blood, administered a chest x-ray, set up an IV for hydration and nausea medicine, and briefly had me on oxygen. The blood work came back slightly anemic, explaining why I had been feeling weak lately and because of my cough and shortness of breath decided it be best if I stayed the night. That night I received more nausea medicine as well as a steroid to decrease inflammation and hopefully combat the coughing. Although what really raised my spirits that night were the flurry of visitors I got, reminding me of the incredible support system that I have. I thank each and every one of you that made it
Wednesday (08/03), the next day, they had scheduled a thoracentesis, a procedure they had wanted to do a month ago at my last hospital stay but there was not enough fluid for them to do it. This time the x-ray showed an abundant amount, some of the "worst they'd ever seen" and promptly did the procedure that drained roughly a 1.5 liters of fluid pressing against my lungs causing the cough and shortness of breath. The doctors were nice enough to let me take a video of it which I've posted below. WARNING: It's not for the faint of heart, so practice caution when viewing.
Although there was some initial and expected discomfort as my lung re-expanded, I immediately felt better and was discharged Thursday (08/04) afternoon with just a new prescription for pain meds until the discomfort went away. I can honestly say this is the best I've felt in the two months since this all began. I don't know how long it'll last, but I'm appreciating it a day at a time and it's helped fuel my hope.
Now for the video:
Tuesday (08/02) afternoon, alongside the two nights of lack of sleep compounded, I felt particularly fatigued that no amount of sleep would seem to satisfy. Before lunch I started a coughing spell that ended in me vomiting just bile, a stipulation that my doctor said warranted a trip to the hospital, and that's exactly where my Mom knew to take me.
We returned to the Santa Monica UCLA Medical Center Emergency Room where they took blood, administered a chest x-ray, set up an IV for hydration and nausea medicine, and briefly had me on oxygen. The blood work came back slightly anemic, explaining why I had been feeling weak lately and because of my cough and shortness of breath decided it be best if I stayed the night. That night I received more nausea medicine as well as a steroid to decrease inflammation and hopefully combat the coughing. Although what really raised my spirits that night were the flurry of visitors I got, reminding me of the incredible support system that I have. I thank each and every one of you that made it
Wednesday (08/03), the next day, they had scheduled a thoracentesis, a procedure they had wanted to do a month ago at my last hospital stay but there was not enough fluid for them to do it. This time the x-ray showed an abundant amount, some of the "worst they'd ever seen" and promptly did the procedure that drained roughly a 1.5 liters of fluid pressing against my lungs causing the cough and shortness of breath. The doctors were nice enough to let me take a video of it which I've posted below. WARNING: It's not for the faint of heart, so practice caution when viewing.
Although there was some initial and expected discomfort as my lung re-expanded, I immediately felt better and was discharged Thursday (08/04) afternoon with just a new prescription for pain meds until the discomfort went away. I can honestly say this is the best I've felt in the two months since this all began. I don't know how long it'll last, but I'm appreciating it a day at a time and it's helped fuel my hope.
Now for the video:
Wednesday, July 27, 2011
07/26/11: Treatment Starts (Finally)
Between now and the last update, not much happened besides a few new prescriptions to manage my heightened symptoms and to prepare myself for chemo (pain medication, cough suppressant inhaler, a few different nausea medications, migraine medication), and an emergency CT Scan last Friday (07/22) that was required for the study doctors. Symptoms had been getting worse, including weakness and pain surrounding my joints, persistent cough, and most especially the return of shortness of breath that seems to escalate as the night goes on to the point where at points I felt a few breathes away from suffocation. And all these things combined made for a difficult time falling asleep.
I can happily report that today (07/26) I have started my treatment in the Picasso study. Despite the wait to get hooked up and the few times I was required to lie down briefly for an EKG (lying down flat only causes the mass to press against my air passages making breathing very difficult), the actual treatment was smooth sailing. I was given Doxorubicin, which I would be given any way, and the experimental drug Palifosfamide (or placebo) which is similar to a drug I'd be taking outside of the study, it just has less side effects.
I go back to continue dosages tomorrow and Friday morning (07/27 - 28) and that will complete cycle one. So far I haven't experienced any uncomfortable side effects, but I'm told those will come when all the dosages are administered.
Even though I anticipated it, I was still scared and anxious about the whole process but it was alleviated as soon as all of you have shown tremendous support. I'm glad I'm finally on a road to possible remission, and I'm especially glad I have so many people I care about by my side.
I can happily report that today (07/26) I have started my treatment in the Picasso study. Despite the wait to get hooked up and the few times I was required to lie down briefly for an EKG (lying down flat only causes the mass to press against my air passages making breathing very difficult), the actual treatment was smooth sailing. I was given Doxorubicin, which I would be given any way, and the experimental drug Palifosfamide (or placebo) which is similar to a drug I'd be taking outside of the study, it just has less side effects.
I go back to continue dosages tomorrow and Friday morning (07/27 - 28) and that will complete cycle one. So far I haven't experienced any uncomfortable side effects, but I'm told those will come when all the dosages are administered.
Even though I anticipated it, I was still scared and anxious about the whole process but it was alleviated as soon as all of you have shown tremendous support. I'm glad I'm finally on a road to possible remission, and I'm especially glad I have so many people I care about by my side.
Sunday, July 17, 2011
07/17/11: Correction
I've been incorrectly referring to my tumor as a spindle cell sarcoma, when in fact that's just a description of a type; basically what the cells look like. It's more specific designation is an intimal sarcoma. I will refer to it as such from here on. Sorry for the confusion.
Friday, July 15, 2011
07/15/11: First Steps.
It's been a hectic last couple of days, but with that came lots of new information and action, so I won't delay any further.
On Wednesday (07/13) I had my first appointment at the Sarcoma Oncology Center here in Santa Monica, where I gave consent to participate in the Picasso Study. If I qualify, it's a possibility that I'll be taking a newer chemo medicine alongside the chemo medicine I would take anyways. The physician at the center said my chances to qualify are based on the grade of the tumor, which the final pathology from UCLA Santa Monica determined as low to intermediate. As long as the center's pathologists can determine that it's at least intermediate, I qualify, and the physician believed my chances were good. If I don't qualify for the study, I will still be treated with the same medicine, just not the newer one. Because the grade of the tumor has been confirmed as low to intermediate, chemotherapy is the best first step in an effort to shrink it down, because as is, it's inoperable. It is not a guarantee, but it's a start.
On Thursday (08/13), my mom was able to squeeze me in at UCLA's Ronald Reagan facility to implant a port-a-cath under my skin so I would be ready when my chemotherapy started. We arrived at 2:00 p.m. and left at 8:00 p.m. and despite the fact that I couldn't eat or drink until the operation at around 4:00, it went smoothly. There is still pain around the incision, but it's been subsiding gradually since the surgery. However, I got two migraines in less than a 12 hour period, which has never happened and I don't know if it's a consequence from the medicine and anesthetic administered during the surgery or something dietary/lack of hydration.
As far as my overall health, some shortness of breath has come back after minor activity and my usual short-lived chest pain in the morning has been lasting much longer. My legs also still don't quite feel right with possible swelling at the knees and ankles, but I believe it's still a matter of lack of use, which is something I need to be more adamant about remedying.
My next appointment is next Tuesday (07/19) with my primary doctor for this particular case. I may have another appointment at the Sarcoma Oncology Center on Monday as well, but we've still got to wait for their pathologists to give them the okay to begin treating me.
I appreciate all the warm words and concerns you've all been sending me, and I'm now glad there is a plan in place to fight this thing!
On Wednesday (07/13) I had my first appointment at the Sarcoma Oncology Center here in Santa Monica, where I gave consent to participate in the Picasso Study. If I qualify, it's a possibility that I'll be taking a newer chemo medicine alongside the chemo medicine I would take anyways. The physician at the center said my chances to qualify are based on the grade of the tumor, which the final pathology from UCLA Santa Monica determined as low to intermediate. As long as the center's pathologists can determine that it's at least intermediate, I qualify, and the physician believed my chances were good. If I don't qualify for the study, I will still be treated with the same medicine, just not the newer one. Because the grade of the tumor has been confirmed as low to intermediate, chemotherapy is the best first step in an effort to shrink it down, because as is, it's inoperable. It is not a guarantee, but it's a start.
On Thursday (08/13), my mom was able to squeeze me in at UCLA's Ronald Reagan facility to implant a port-a-cath under my skin so I would be ready when my chemotherapy started. We arrived at 2:00 p.m. and left at 8:00 p.m. and despite the fact that I couldn't eat or drink until the operation at around 4:00, it went smoothly. There is still pain around the incision, but it's been subsiding gradually since the surgery. However, I got two migraines in less than a 12 hour period, which has never happened and I don't know if it's a consequence from the medicine and anesthetic administered during the surgery or something dietary/lack of hydration.
As far as my overall health, some shortness of breath has come back after minor activity and my usual short-lived chest pain in the morning has been lasting much longer. My legs also still don't quite feel right with possible swelling at the knees and ankles, but I believe it's still a matter of lack of use, which is something I need to be more adamant about remedying.
My next appointment is next Tuesday (07/19) with my primary doctor for this particular case. I may have another appointment at the Sarcoma Oncology Center on Monday as well, but we've still got to wait for their pathologists to give them the okay to begin treating me.
I appreciate all the warm words and concerns you've all been sending me, and I'm now glad there is a plan in place to fight this thing!
Saturday, July 9, 2011
07/09/11: And More Anticipation.
I was discharged from the hospital again on Thursday (07/07) as my fevers, although high, had been stable and there were no signs of infection or pneumonia.
We returned the next day, Friday (07/08), for our appointment to receive the final pathology results. Unfortunately, they're still not in due to the incredibly rare nature of this form of cancer. They informed us that so far the tumor appears to be intermediate, between low and high grade, but they still have another strain to test in order to be conclusive. They told us it should be completed by Wednesday (07/13).
A little frustrating, but I understand they want to be completely certain about the details of this tumor because it will ultimately determine which treatments will be effective, ineffective, or even harmful. I'd rather they take the time rather than to rush into a treatment option that may prove to unnecessary or malignant.
I also received news that I may be starting my treatment at the Santa Monica UCLA Medical Center instead of elsewhere. Which is good news as I already have all my records there and it's close to home.
For the time being I'm at home, prescribed with a codeine cough syrup and a short antibiotic script. Some strength is coming back, but still not feeling close to 100%. Getting plenty of rest and love and support from you guys though, which is helping me tremendously and I don't know how'd I get through this without it.
We returned the next day, Friday (07/08), for our appointment to receive the final pathology results. Unfortunately, they're still not in due to the incredibly rare nature of this form of cancer. They informed us that so far the tumor appears to be intermediate, between low and high grade, but they still have another strain to test in order to be conclusive. They told us it should be completed by Wednesday (07/13).
A little frustrating, but I understand they want to be completely certain about the details of this tumor because it will ultimately determine which treatments will be effective, ineffective, or even harmful. I'd rather they take the time rather than to rush into a treatment option that may prove to unnecessary or malignant.
I also received news that I may be starting my treatment at the Santa Monica UCLA Medical Center instead of elsewhere. Which is good news as I already have all my records there and it's close to home.
For the time being I'm at home, prescribed with a codeine cough syrup and a short antibiotic script. Some strength is coming back, but still not feeling close to 100%. Getting plenty of rest and love and support from you guys though, which is helping me tremendously and I don't know how'd I get through this without it.
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