Zach Sobiech is a 17 year old diagnosed with osteosarcoma, a rare form of bone cancer. With only months to live, Zach turned to music to say goodbye. Zach tu…
“You don’t have to find out you’re dying, to start living” -Zach Sobiech. RIP.
Watch this inspirational video, for we all should live everyday to its fullest.
This is a great piece written by a dear friend who covered everything that I have been through the past 5 years. It is a very good read!
March 27, 2013 at 5:57pm
Man Behind The Mask:
Huffington Post Blog 2
February 6, 2013 at 12:46pm
It’s been awhile…
I know guys, I am sorry. It has been way to long since my last update. I am somewhere around day 120, and I would say everything is going pretty well. For the most part I feel good. I have had some hiccups along the way, but nothing that Mr. Superman, aka Dr. Forman can’t solve. I was on steroids for about 5 weeks while I was battling GVHD. I had a pretty bad skin rash, and we had to taper off the steroids slowly. They worked but gave me some funky side effects. My cheeks were huge, I had massive zits on my face, and had some pretty bad joint pain. But since I have been off the steroids I have been feeling normal. At about day 80, when I was taken off of the steroids, my doctor gave me the green light to take off my mask, and he allowed me to eat regular food. Wow. That was a great day. Since then, it has been a battle with flu season. We (my family and I) are very cautious and try not to take unnecessary risks. In reality, I use a lot of hand sanitizer and try to avoid large crowds in enclosed areas. It’s tough, but for the best. Unfortunately, about 2 weeks ago, I caught some kind of virus, got a fever, and had to be admitted to the hospital. The fever only lasted about a day, but just to be cautious I spent about 5 long, annoying, days in the hospital. Since I got rid of the virus we have seen a minor recurrence of GVHD in the form of a skin rash. We think the virus broke down my immune system and reactivated the fight between my donor and I. So, I am back on steroids, but a very low dose, hoping for little of those pesky side effects. And that is where we are today. I try to walk/work out when I can. I see friends as often as possible, and I am really just waiting for flu season to be over. I wear a golf hat, the one that has a long front, short sides. I have side burns and hair in the back of my head so it gives people the illusion I have a full head of hair. When in reality I am still trying to grow hair on the top of my head. It is coming in, slowly, but surely.
I am currently planning another fundraiser at UC Irvine sometime in May. Not sure if ya’ll remember, but my last fundraiser in Irvine was a huge success. We actually swabbed 88 people into the marrow registry and we got 5 potential matches. From those five potential matches, three people have been matched up perfectly with a donor and two have already donated. The other one is planned to donate in mid March. It is so amazing to see that my fundraiser actually saved lives. My passion toward finding matches for people has grown immensely. I am going to add this project of finding matches into my foundation. Right now, there are 224 people without a match, desperate to find one. That is not okay. So if you haven’t joined yet, the registry is at www.marrow.org. All you do is swab your cheeks, and they will contact you later if need be.
I am looking forward to spring and for flu season to go away. I will probably start working then, not sure where, but something to get me back into life! My family and I have planned a Vegas and Hawaii trip for the summer and I can’t wait!!
That’s all for now. I will try to update more often.
December 17, 2012 at 1:24am
We are here to support young adult cancer survivors and all people battling this horrible disease! We will never stop until the war on cancer is over. #nevergiveup #cancersucks #fight #cuckfancer
November 27, 2012 at 8:58am
Feels Good to Be at Home
I have been out of the hospital for 14 days now and I am happy and content with the way I am feeling. I am relieved to be home and in my own bed, with my family, eating lots of food (thanks to mega doses of steroids) while giving my body the time it needs to recover. As somebody that has always looked toward the future and the next thing, for the first time in my life I am content with waking up every morning, sitting around my house and doing very little. I think I have become more grateful and appreciative of the little things in life, no longer taking the small pleasures for granted. In the hospital, I had almost no freedom. Dr. Forman referred to this feeling as incarceration. Having never been in jail it’s hard to know if that’s true, but what I can say is that the freedom I now feel is overwhelming. To walk around my home without an IV pole and not get bothered every other moment for vitals, blood or whatever is calming, to say the least.
As of now, I go to the doctor twice a week for check-ups. My doctor checks my blood counts, liver, kidney, etc to make sure that the new donor cells are working with my old cells to create a healthy functioning immune system. I am on many medications. Most of these drugs help the new donor cells adapt to my body without my body rejecting them. We know this rejection as graph vs. host disease, and right now we are in the acute phase of this disease. In the beginning stage, GVHD develops as a rash and fever. I developed a rash within days of leaving the hospital. Skin and GI problems are the most common side effects of acute graph vs. host disease. Because of this rash, I have been put on large doses of steroids that help the anti-rejection drugs suppress my old immune system, giving the new donor cells more time to settle in, without compromising my body too much. Steroids are not a long-term solution and already the good doc Forman is attempting to reduce them hoping that the donor cells are settling into their new home without too much fight from me. The doctor says the engraphment is going well, in fact he said it’s as good as he has ever seen at this point in the process.
This is a day-by-day process. There is no knowing, nor controlling how I’ll be in a week, a month or in 6 months, but what I (we) can do is give my body the best fighting chance to recover from this transplant. Part of that process is a low bacteria diet, which turns out to be very manageable. I wear a mask if I leave the house, and I am constantly aware of the germs around me to reduce any possibility of complications. Honestly, I don’t mind any of this. I am just grateful to be home with my family and to be feeling well enough to speak with friends, eat the wonderful food supplied by loved ones and rest.
November 21, 2012 at 1:02pm
Great Article on Young Adult Cancer
As I was checking the news this morning I came across a great article that spoke to me and what Cuck Fancer stands for. In this article you will see the many problems young adults face when diagnosed with cancer at a young age. Many of these problems include not being able to afford healthcare. Laura Schocker adds, “The questions start piling up: How do you date? Can you still have children? What about your career? And how are you going to pay the medical bills?”
Please take a moment to read this: http://www.huffingtonpost.com/laura-schocker/generation-why_b_2161738.html?utm_hp_ref=tw
November 8, 2012 at 5:20pm
Finally…After 31 Days
I’m Coming Home.
October 31, 2012 at 7:21pm
Day +19 Happy Halloween
It’s official I’m engraphing! Feeling like I’m coming into the home stretch. My body has started to take up these new cells and beginning to reproduce. Another important milestone crossed off.
As a result of my rising blood counts, I am starting to feel more like me. I’m still really tired and sleeping a lot (in-between blood draws, platelet transfusions, vitals, hanging meds…) and beginning to walk the halls. It’s now clear to me as I start to get moving that it will be physically, a long road back. Once around the hall and I’m exhausted. Don’t get me wrong, I’m not complaining, just eager to get back to my life.
Today, the doctor said they would begin reducing many of the meds I’m on, like steroids, antibiotics, food in a bag, etc. The goal will be to take my meds orally, begin to eat again and get moving. If all goes according to plan, I might get out of here by early next week!!
I know the long journey back to good physical heath will be challenging, navigating possible gvh, but I’m eager to get home and begin that process.