It's not beer I promise!
Brother Tom, a.k.a. 1 in 4 chance to be a Bone Marrow donor - was a match - is living hero.
Sunday 8 July 2012
Rise Against
We get by just fine here on minimum wage. If love is a labour I'll slave till the end, I won't cross these streets until you hold my hand.
Plain White Tee
Hey there Delilah,
What's it like in New York City?
I'm a thousand miles away
But girl, tonight you look so pretty.
Yes you do.
Times Square can't shine as bright as you.
Don't you worry about the distance,
I'm right there if you get lonely.
Give this song another listen,
Close your eyes,
Listen to my voice, It's my disguise.
I'm by your side.
Thursday 5 July 2012
The *WOUNDS* !
This gets graphic!
Port went into chest, tube went into heart. It made it SO EASY to get blood out and medication in!!
The symptom that led to the diagnosis. Torso spots.
Skin Graft.
Not the cancer - just a crazy symptom, a hump blood clot on the leg that needed to be removed. And needed a skin graft.
Wednesday 4 July 2012
For My Family & Friends
INTRODUCTION
Some of you have been told my recent news by myself, and some have been told by others, and some not at all, so I'm writing to let you know the specifics of what's going on at the moment. I just want to also say that I really appreciate the well wishes from everyone. It really does mean a whole lot to me, thank you.
THE BEGINNING
My boyfriend Matt was recently in hospital to have a lesion removed from his leg. The good news is that the operation was successful and the lesion was removed without any complications, and sealed using a skin graft from his upper leg.
THE DIAGNOSIS
The bad news is, upon testing the lesion to find it's origins, the doctors discovered what had caused this lump to appear. As it turns out it was caused by a very rare and aggressive form of leukemia (known as Blastic Plasmapcytoid Dendritic Cell Neoplasm, or "BPDCN") which means that he has been diagnosed with a type of blood/bone marrow cancer.
THE PROGNOSIS
This diagnosis came as a giant shock to Matt, his family, and obviously to myself as well. Cancer isn't something that one ever expects to deal with, especially so soon in life. The prognosis for this form of cancer is not great - as traditional hospitalised chemotherapy treatment only appears to keep this disease in remission for a short time with relapse following almost inevitably. However there is hope. There is another options, if a matching bone marrow donor can be found then a transplant could save Matt's life.
THE PROBLEM
In very basic terms, the problem is: Matt's bone marrow is not creating his white blood cells properly. The white blood cells aren't fighting off diseases properly and doing other things like they should be. The bone marrow creates white blood cells that are infected with mutated cells. The cure for this is to remove Matt's ineffective bone marrow, and replace it with someone elses bone marrow. This transplant will destroy Matt's ability to make bad white blood cells and allow him to make nice, lovely working ones.
THE TREATMENT
The treatment plan the doctors set out includes treating Matt with a high dose chemotherapy course (which he has started already) to remove the cancer-effected cells, followed by more chemotherapy to keep the disease away and in remission while they work on getting the new bone marrow transplanted. Once the disease it's under control, they will need to perform a bone marrow transplant to remove Matt's ability to create defective white blood cells.
THE BONE MARROW DONOR
Now typically this is where most people in his situation have the greatest trouble. Finding a bone marrow donor who matches your tissue type (a sort of really complex blood group) is a hard, long and troublesome process which may end without ever finding a donor at all. Tom (Matt's brother) was tested with a 75% chance of failure. About a week ago, and against the odds, we received the most amazing news of our lives. His brother Tom turned out to be a blood, tissue type and age match for Matt. A transplant of Tom's bone marrow will make it possible to save Matt's life.
THE GOOD NEWS
This news brings with it the absolute best case scenario for his treatment and recovery. Without an early bone marrow transplant the disease would be much, much harder to handle, however now we have the pedal to the metal and are looking at having a bone marrow transplant as soon as one month from now.
THE HARDEST PART
Although this is fantastic news, it still doesn't mean he's out of the woods yet. The hardest part of this disease is the treatment itself. He's already done a lot of his chemotherapy course to get the leukemia into remission and so far it seems to be working. He's had a few side effects typical of chemotherapy, including nausea, fatigue and hair loss. But the real trial lays in the perpetration, administration and recovery of his bone marrow transplant.
DETAILS: WHAT IS A BONE MARROW TRANSPLANT?
A bone marrow transplant is used because his form of leukemia is, specifically, causing mutated white blood cells to be created from within the bone marrow itself. Meaning that the only way to stop these mutations is to physically swap his bone marrow (and theoretically his entire immune system) with someone else's. The problem with a bone marrow transplant is that it's a large and complicated process. What has to happen is that a very high dose of chemotherapy and possibly radiation will be administered to his body until every trace of Matt's existing bone marrow and his personal immune system is completely gone. This then gives his new bone marrow (courtesy of Tom) a "fresh start" to grow into.
THE ISOLATION
This treatment will most critically leave him with almost zero immune system for several months while the transplant takes hold. Which means he will be open to all sorts of infections, bugs, and all other nasty things which usually don't bother us when we have a working immune system. It's for this reason during his perpetration for the transplant he will be spending most of time in hospital receiving around-the-clock care and attention. However there may be a day or two in there where he's well enough to get out and do some living. In which case he'll hopefully be able to organise an outing with friends. I look forward to those days!
THE GRAFT vs HOST DISEASE
The second series of complications comes after the surgery for bone marrow transplant has been done. These complications revolve around how his body adapts to having a new and different immune system. Similar to having an organ transplant a bone marrow transplant carries a risk of rejection from Matt's body. When he has new bone marrow introduced to his body it will hopefully start making brand new white blood cells free from mutation. But because these white blood cells have been made by Tom's bone marrow there's a chance they might start attacking Matt's organs thinking they are fighting off foreign objects from Tom. This is known as graft vs host disease (GVHD) and is probably the most common complication of a bone marrow transplant. GVHD can vary greatly in how it's presented and how it manifests itself. It can range from muscle weakness and shortness of breath to digestive problems and weight loss. Also once again during the recovery from his transplant his immune system will be severely compromised and he will again be at risk from infection and other immune related problems.
THE RECOVERY
Recovery time is greatly dependent on many, many factors all acting on each other and as such could mean anywhere between 2 - 18 months of strict hospitalisation and treatment for complications. Complications are to be expected and we can only face them as they arrive. So although these last two weeks have brought us a range of shocking and difficult news, it is with great joy that I write to you from this new position of power where his future seems bright and his immediate outlook is positive. Now that's not to say that things won't be hard, the next few months will be the hardest time he has ever and probably will ever face. But he's confident that he will beat the hell out of this disease and come out the other end the same old Matt. And it's that Matt-ness that will see him fighting strong through this. Strength, scientific mindedness, logical approach, humour, happiness and lots of support from his nearest and dearest, which he has.
Some of you have been told my recent news by myself, and some have been told by others, and some not at all, so I'm writing to let you know the specifics of what's going on at the moment. I just want to also say that I really appreciate the well wishes from everyone. It really does mean a whole lot to me, thank you.
THE BEGINNING
My boyfriend Matt was recently in hospital to have a lesion removed from his leg. The good news is that the operation was successful and the lesion was removed without any complications, and sealed using a skin graft from his upper leg.
THE DIAGNOSIS
The bad news is, upon testing the lesion to find it's origins, the doctors discovered what had caused this lump to appear. As it turns out it was caused by a very rare and aggressive form of leukemia (known as Blastic Plasmapcytoid Dendritic Cell Neoplasm, or "BPDCN") which means that he has been diagnosed with a type of blood/bone marrow cancer.
THE PROGNOSIS
This diagnosis came as a giant shock to Matt, his family, and obviously to myself as well. Cancer isn't something that one ever expects to deal with, especially so soon in life. The prognosis for this form of cancer is not great - as traditional hospitalised chemotherapy treatment only appears to keep this disease in remission for a short time with relapse following almost inevitably. However there is hope. There is another options, if a matching bone marrow donor can be found then a transplant could save Matt's life.
THE PROBLEM
In very basic terms, the problem is: Matt's bone marrow is not creating his white blood cells properly. The white blood cells aren't fighting off diseases properly and doing other things like they should be. The bone marrow creates white blood cells that are infected with mutated cells. The cure for this is to remove Matt's ineffective bone marrow, and replace it with someone elses bone marrow. This transplant will destroy Matt's ability to make bad white blood cells and allow him to make nice, lovely working ones.
THE TREATMENT
The treatment plan the doctors set out includes treating Matt with a high dose chemotherapy course (which he has started already) to remove the cancer-effected cells, followed by more chemotherapy to keep the disease away and in remission while they work on getting the new bone marrow transplanted. Once the disease it's under control, they will need to perform a bone marrow transplant to remove Matt's ability to create defective white blood cells.
THE BONE MARROW DONOR
Now typically this is where most people in his situation have the greatest trouble. Finding a bone marrow donor who matches your tissue type (a sort of really complex blood group) is a hard, long and troublesome process which may end without ever finding a donor at all. Tom (Matt's brother) was tested with a 75% chance of failure. About a week ago, and against the odds, we received the most amazing news of our lives. His brother Tom turned out to be a blood, tissue type and age match for Matt. A transplant of Tom's bone marrow will make it possible to save Matt's life.
THE GOOD NEWS
This news brings with it the absolute best case scenario for his treatment and recovery. Without an early bone marrow transplant the disease would be much, much harder to handle, however now we have the pedal to the metal and are looking at having a bone marrow transplant as soon as one month from now.
THE HARDEST PART
Although this is fantastic news, it still doesn't mean he's out of the woods yet. The hardest part of this disease is the treatment itself. He's already done a lot of his chemotherapy course to get the leukemia into remission and so far it seems to be working. He's had a few side effects typical of chemotherapy, including nausea, fatigue and hair loss. But the real trial lays in the perpetration, administration and recovery of his bone marrow transplant.
DETAILS: WHAT IS A BONE MARROW TRANSPLANT?
A bone marrow transplant is used because his form of leukemia is, specifically, causing mutated white blood cells to be created from within the bone marrow itself. Meaning that the only way to stop these mutations is to physically swap his bone marrow (and theoretically his entire immune system) with someone else's. The problem with a bone marrow transplant is that it's a large and complicated process. What has to happen is that a very high dose of chemotherapy and possibly radiation will be administered to his body until every trace of Matt's existing bone marrow and his personal immune system is completely gone. This then gives his new bone marrow (courtesy of Tom) a "fresh start" to grow into.
THE ISOLATION
This treatment will most critically leave him with almost zero immune system for several months while the transplant takes hold. Which means he will be open to all sorts of infections, bugs, and all other nasty things which usually don't bother us when we have a working immune system. It's for this reason during his perpetration for the transplant he will be spending most of time in hospital receiving around-the-clock care and attention. However there may be a day or two in there where he's well enough to get out and do some living. In which case he'll hopefully be able to organise an outing with friends. I look forward to those days!
THE GRAFT vs HOST DISEASE
The second series of complications comes after the surgery for bone marrow transplant has been done. These complications revolve around how his body adapts to having a new and different immune system. Similar to having an organ transplant a bone marrow transplant carries a risk of rejection from Matt's body. When he has new bone marrow introduced to his body it will hopefully start making brand new white blood cells free from mutation. But because these white blood cells have been made by Tom's bone marrow there's a chance they might start attacking Matt's organs thinking they are fighting off foreign objects from Tom. This is known as graft vs host disease (GVHD) and is probably the most common complication of a bone marrow transplant. GVHD can vary greatly in how it's presented and how it manifests itself. It can range from muscle weakness and shortness of breath to digestive problems and weight loss. Also once again during the recovery from his transplant his immune system will be severely compromised and he will again be at risk from infection and other immune related problems.
THE RECOVERY
Recovery time is greatly dependent on many, many factors all acting on each other and as such could mean anywhere between 2 - 18 months of strict hospitalisation and treatment for complications. Complications are to be expected and we can only face them as they arrive. So although these last two weeks have brought us a range of shocking and difficult news, it is with great joy that I write to you from this new position of power where his future seems bright and his immediate outlook is positive. Now that's not to say that things won't be hard, the next few months will be the hardest time he has ever and probably will ever face. But he's confident that he will beat the hell out of this disease and come out the other end the same old Matt. And it's that Matt-ness that will see him fighting strong through this. Strength, scientific mindedness, logical approach, humour, happiness and lots of support from his nearest and dearest, which he has.
Tuesday 3 July 2012
Donating Bone Marrow
Use your body for something useful - Sign up to donate bone marrow. You can be the cure for cancer that a stranger is waiting for, and all you need to do it sit quietly in a comfortable chair for an hour.
CLICK : http://www.abmdr.org.au/
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